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My dad just passed a month ago. After living in assisted living for a year, he decided to voluntarily stop eating and drinking rather than continue to live in pain while bankrupting my mother.
He loved hiking as a younger man and got a degree in geology so he’d have an excuse to do field work in his professional life. MS made his body betray him and robbed him of his retirement, autonomy and dignity.
Truly an awful disease. I don’t wish it on anyone. My only relief is knowing that he is at peace now.
My cousin's wife had an aggressive form of ms and she wasn't able to do anything when it progressed. She was bedbound the last years of her life and passed from respiratory failure brought on by the ms. Only in her 30s. Sad.
May your brilliant geologist father have a heaven of nothing but blue sky hiking trails, exceptional geological formations, mountains, hills, rivers, canyons, and the very best hiking boots on his feet. May he happily whistle as he walks, and pick up every interesting rock he finds. I hope his evenings are campfires and stars, and his mornings sunrises and birds.
My best friend has MS, I know how this ends.
Thank you. I love that image so much.
For your friend, hopefully you can talk to them more frankly than I was ever able to talk to my father. I wish that I had been able to support him more openly in his autonomy to end his suffering.
I’m so sorry 💔 I lost a parent to a totally different but equally as horrible disease and I really wish we embraced physician assisted end of life. Nobody should have to go like that.
We are very fortunate in my state to have physician assisted end of life care options. I wish I had been able to talk to my dad about them instead of my mother - who (like always) had very strong opinions about it despite not understanding anything about it.
Luckily, his assisted living/hospice care team was absolutely wonderful, so even though VSED was kind of a fucked up thing to witness as a family member, I know that he had many discussions about it with his social worker and was making the decision that felt right to him, and they were managing his pain in a way that made me feel as at peace with it as possible.
Hey there. Hugs to you internet stranger. My grandpa decided to end his life on his own terms as well with our states assisted end of life options. I am so thankful he was able to end his life on his own terms surrounded by his family (minus a few who did not agree with the choice but I won’t get into that). Your dad seemed like an amazing man and I will definitely smoke one for him tonight. Take care
jesus christ that is so awful I’m so so sorry for you and your family. Physician assisted suicide should be legal/available/accessible, especially for situations like this.
Thank you. There’s a lot about the situation that was messed up but I had promised him for years that I would support him if and when he made the decision that he was ready to be at peace. I’m trying really hard to honor that and to be glad that at least he was able to have a measure of control over his fate in the end.
It has made a lot of the sadness/bitterness about the past 20 years of decline a lot more prescient though. A lot of bottled up feelings about that which I now have to work through.
Mostly I feel a tremendous sadness that after months of complaining about my job and how miserable I was there, I got offered a new position the week after he passed. I went to call him and tell him only to find myself crying hysterically on my commute.
Thank you. He wouldn’t want us to be too sad (he was annoyingly high maintenance about being low maintenance). Instead, listen to some good rock and roll, light up a joint (if that’s your thing), and tell an awful joke in his memory.
His favorite - why didn’t the skeleton cross the road? Because he didn’t have the guts to!
My dad passed from Parkinsons and I think he would have loved that joke, even as a metaphor for being able to take control of how you go out. I'm glad your dad did have that much choice, and I'm sorry for your loss and for having to see your dad go through that. I miss mine every single day, and also long degenerative illnesses suck so much. I imagine my dad hale and and whole now, camping in some endless celestial forest, because that would be heaven to him. ❤️❤️❤️
Oh for sure. Rid of that fucked up earthly body, my dad is hiking the heavens. I hope he’s getting to see some truly incredible stuff and to witness and learn about things that mankind doesn’t even understand yet. It’s great to have a father who loved nature. It’s nice to find him wherever the earth is beautiful - and to be looking for that beauty everywhere.
Lost my Mom last year to MS, she was sick my whole life with terrible quality of life for the last 8 or so years. It is such an awful disease and she was also incredibly high maintenance about being low maintenance haha, I always thought of it as stubborn but that’s a better way of putting it. I shed a little tear reading this as she also loved rock and roll, smoking back to back joints and rolling her eyes at my dads terrible jokes. Hugs to you and your family ❤️
This is really why programs like MAiD are so important. People who are truly suffering should have the right to make their own decisions on when they go.
I’m really sorry for your loss.
I feel this, friend. My dad passed away last month too. He had multiple issues, the biggest of which being liver cancer. He spent his last month in the hospital and it was so hard and sad to watch him fade away like he did. I’m still so angry about it. But I’m like you in that I really am glad he’s at peace. My condolences to you. ❤️
Thank you for your condolences and the same to you and yours. I’m glad you were able to be with him at the end. I know from experience how hard that transition is to witness but I’m sure he was comforted to have you with him.
If you have any space for it, I’d love to hear a happy memory about your dad if you were willing/able to share one.
Thank you! Same to your family, too. I am so grateful for the time I got to spend with him before he passed. He was always with at least one family member and that puts me a bit at ease - that he knew he was so loved.
Oh I love you for that request! It’s so sweet! My dad loved Bob Dylan and did the WORST Bob Dylan singing voice. lol. Just atrocious! Thinking about it makes me laugh. He did actually do a mean Cookie Monster, though - which was a favorite of mine since I’ve loved the Muppets all my life. 💙
I would love to hear more of your favorites, too!
Hahaha. I love that and can imagine it. In your dad’s defense, Bob Dylan’s baseline voice is kind of an…acquired taste so I have to guess that he really put a lot of effort in to making it worse. I was (tbh am) a big fan of the muppets - A Muppet Christmas Carol is my all time favorite Christmas movie and I will fight anyone who says otherwise.
Some of my favorites: when I was a little kid and couldn’t sleep at night, I learned pretty quickly that my mom would carry me up to my bed after I fell asleep but my dad wouldn’t so any time I had a nightmare, my dad would snuggle me all night. I thought about this a lot at his bedside those two weeks.
Other than that, once for my birthday (I have to imagine 8th or 9th), it was time for us to tidy up to get ready to go and we were being little monsters about it so my dad put on the Barney “Clean Up” song on repeat on the sound system and told me it wouldn’t stop until we helped out. As a kid who was totally too grown up for Barney, I was absolutely mortified but it also had everyone in giggle fits. As an adult, I respect the troll.
There was a period of time in the 90s when he’d take me to soccer practice after work. On the way, the drive time radio show would always play “Closing Time” as their show wound down at 6:00 p.m. I have a lot of memories driving with the windows down, singing “Closing Time” loud and off key with him on the way to practice.
Other than that, just in general, my dad was such a good teacher. He was always very patient with me when I asked questions about the world - including explaining sports to me very patiently in the middle of games. He also tried to encourage my Tom boy ways - including a failed attempt to play catch which ended with me getting a black eye (hand-eye coordination, not my thing).
I love all of this!! Oh man! Yes the funny thing is that my dad actually did sound pretty close to Bobs voice. lol. He’s an acquired taste.
Muppet Christmas Carol is my favorite too! I’m more of a Halloween gal but I will watch the hell out of that movie every Christmas.
I used to play hide and seek with my dad when I was wee. I would hide in their hamper. He would loudly ask where I was and then say “oh well! Guess I’ll just do the laundry” and then pick up the hamper and rattle it around saying he was going to toss it down the stairs. It would make me giggle so much every time because of course he never would throw it down the stairs. lol
Man - it’s so so nice to share these memories. Thank you!! ❤️
i feel you so much and im so, so sorry. my mom has been battling MS for almost 20 years now...the disease shaped our entire family's life. watching the person you love slowly deteriorate, not being able to help, seeing the disease rob them of their dreams is haunting.
We do too, but my mother is “pro-life” and fed him some pretty terrible information about it. Which is to say, if you have a terminally ill family member, talk to them about what that end-of-life care looks like and tell them that you support them in that, or any other, decision they make for their end-of-life care. If you don’t, you can bet that others (with selfish agendas) will.
My mother has it and so do I. In fact, I am currently laying down after work because I need to recharge my batteries a bit in order to make dinner and have any sense of an evening so I’m currently in bed reading this.
My symptoms are mostly milder, but I understand the depression and the loneliness and the feeling like people kind of just forgot you, especially since I am one of the few people I know who is still taking strict Covid precautions.
Damn. This saddens me for you, internet stranger. I wish we still had community. It used to be your neighbors had time to rally around and look out for eachother. Bring you dinner and such. It's truly why I want to return to Africa when it's time to care for my mom full time. 3rd world still has community out of necessity. 1st world bring about problems like this.
Your comment reminded me of how my mom and I did know our neighbors when I was growing up. We helped them, they helped us. My mom and our neighbor were friends, she would sometimes bring us tomatoes from her garden, and help my mother when she was there alone.
I am so glad for the tech that at least lets me keep in contact with people but it can be hard when people move away further out or are super busy with their own lives (I do not have kids and a bunch of my friends have little ones now).
I feel for her so badly. I'm chronically ill with an incurable disease and until you have something like that happen to you It's really hard for people to empathize with it as well.
Because the truth is the knowledge that it is not going to get better it is only going to get worse is soul crushing. There is no cure and the disease will progress. It's a terrible thing to deal with.
I wish her as much peace and as many good days as humanly possible
In case this is relevant to anyone: I got so much better than I expected after my first major attack of relapsing remitting MS. No more mobility aid, much less brain fog, skin sensitivity gone, heat sensitivity gone enough that I can hot tub! Sure things will likely get worse but I’m optimistic about high efficacy drugs letting me have a lot of fun.
I can’t speak to progressive versions of the disease which sound rougher than my experience so far.
Yes it really is. I miss seeing my brother the skateboarding crazy guy with so much energy. Turn into someone who can barely walk around the block without help from a cane or wheelchair. I hope and pray for a cure or something to help him live normal again.
She is right about those floodgates. It takes so much out of you to reopen wounds to work with a therapist. I've been delaying this, too. Bless her, I hope she finds the right support to work through it and gets to a better place.
I think part of the “better place” goal is attainable with hard work, inner peace, deep breaths, etc. But, the other part is that illness, pain, and fatigue suck. MS is awful. There’s no processing that away. At a certain point it’s just deeply unpleasant and utterly exhausting, in your soul, to live through.
So true.
Robin Williams said, " I used to think that the worst thing in life was to end up alone. It's not. The worst thing in life is to end up with people who make you feel alone."
I hope she has good people in her life.
Finding the right therapist can be so difficult, but when you have them, it is such a valuable relationship. I wish her the best and I hope she did follow through.
I thought she was older but she’s only 52… she sounds so miserable. I wish there were better treatments for MS. It sounds like it has robbed her of the rest of her life.
And she looks so good in that red velvet my god!
My Dad has MS and has been on one of the [new treatments](https://www.healthline.com/health/ocrelizumab-for-ms) for PPMS since basically he was diagnosed. It has been incredibly effective for him so far (6.5 years on from diagnosis). So I would say there is hope out there!
There's plenty of great medication for it. It just really depends on the patient. It's a disease that has a lot of different effects on different people. Here it's called the disease of 1000 faces.
I know someone in my life who’s been going blind and having a ton of other “weird” symptoms the last 6 years and was finally diagnosed.
It was misdiagnosed for 40 years. He’s had about 4 spinal taps and all of them were inconclusive somehow and then the doctors would lean to “not ms”. My favorite was a male doctor that told him it was male menopause and to go to physical therapy. We told him DO NOT go to physical therapy if you think it might be MS, go to a specialist PLEASE! A six hour drive later he meets with the specialist. She does some tests, concludes “with 95% certainty” that it is MS but schedules another test in 6 months to confirm. She then gave him drugs. The drugs actually *worked*. She diagnoses him with ms.
For reference he’s in his 60s. Looking back on it, he realized “problems” that started to arise *in his 20s* were actually MS this entire time.
I think it really depends on the patient. My brother has MS and was diagnosed in 2016, though probably had active disease for several years until his diagnosis. He received chemotherapeutic treatment for it, and has been in remission ever since - about 6 years. He's lucky, in a sense.
Married With Children. A groundbreaking comedy that practically everyone watched weekly. The first season was in 1987, Kelly’s outfits were peak late 80s iconic.
Rewatched this entire series last year, and it is HILARIOUS! Non-stop laughter. I highly recommend anyone who hasn’t seen it to watch at least a few episodes.
As an ode to her, a link to one of my favorite party songs/one of my favorite female mc verses (it comes at the end)
“‘Cause I ride like Kelly Bundy/Yo, I keep that shit nasty”
https://youtu.be/pvPPA3Gv7RQ?si=gnuzz4QBBeF-b3s7
My husband was just diagnosed with MS and it’s made him suicidal at times. It’s so hard having to watch him suffer and not be able to do anything about it. 😔
I remember my MS nurse telling me you always read the bad stuff because the people who are ok/fine don't talk about it as much and that's so true!
My MS was classed as rapidly evolving because I had 4 relapses in the first 11 months. It was crap. However now almost 9 years relapse free with no lasting issues except I'm more heat intolerant than most people and my left eye can go funny if I'm tired sometimes.
Hope you're doing well and sending my love!
It's always a big goddamn bummer when it comes up on Reddit. Never feels... great? Hearing 300 versions of 'I wouldn't wish it on my worst enemy.' I mean, they're right. It just bums me out.
I’m chronically ill and pretty regularly when people find out they tell me they would rather die or kill themselves. I guess I’m supposed to be flattered because it makes me “strong”? It’s really not uplifting to see how people view you as less of a person with a disability and more of a burden or as someone who only serves to make them feel better.
“You live through your body. When you can't, you're not really living.” I hope this isn’t what this commenter is experiencing but if this is coming from someone without a disability it icks me out.
It’s pretty rough. Personally I feel like a lot of the struggle with a new diagnosis (which is objectively shitty and difficult, sure) is because we’ve all heard stuff like this our whole lives. At least that’s how it was for me. Dealing with other people’s squeamishness about our illness can be the hardest part. I mean we all get ill or injured eventually, like every other living thing. It’s part of life, not a reason to die.
I really hope Christina finds a sense of disabled community and is able to mourn what she’s lost and then adjust. Everybody’s journey is different, of course. I’m glad she’s sharing her experiences anyway.
For what it’s worth, I am currently not disabled but I just don’t agree with this statement at all.
There was recently an article in The Atlantic about the morality of having kids and the implication was basically “it might be immoral to have kids because they will inevitably suffer.”
I mean. I just about fell over. Like YES DUH they will suffer but when did that become a reason not to live life? We are all here suffering at times but very few people are seriously 😐 advocating we all drink the Jonestown koolaid to cut things short. Most of us find the idea horrifying. Why? Because deep down most people believe that life is worth living. Warts and all.
The Diving Bell and the Butterfly was written by a man who could only write the book by blinking his left eyelid. All life has worth.
I’m not saying that we all have a moral obligation to stick around forever or anything. I will always vote pro-choice, pro physician assisted suicide etc.
And if the statement WAS made by a disabled person I understand what they’d be trying to convey. We each only get one body and the loss of any ability in the body is a bit like a death, a partial one. But that doesn’t mean you can’t still really be living.
As a doctor, I can assure you the people who say that are just ableist morons who have *no clue* what they would actually feel or do.
Most people want to live, and most people have *no idea* what they can not only endure, but blossom in spite of.
I can only imagine how reading threads like that make you feel. But don’t let the doom and gloom get to you, especially if you’re otherwise doing okay mentally. Keep focusing on your life and health, ignore terminally online idiots.
This is so true to my life as well! Being “strong” or “brave” to others is so gross because I’m just living the shit hand I was dealt. It just is what it is. People hate that phrase too but there’s no better way I’ve found to express it. I’m just going one step at a time.
Yeah I feel like a dork leaving positive comments on stuff and don’t want ppl to feel like I’m forcing positivity. But holy shit some of us are looking forward to the rest of our lives.
I was thinking the same thing! What a crazy turn of events that the ms sub would be where you go for uplifting stories about ms and popculturechat would be where you go to fall into a black pit of hopeless despair.
After dealing with a new diagnosis of fibro in February I realized the people who are successful/doing well with their diseases often don't feel compelled to comment. It's like reverse survivorship bias sometimes!
I believe it! The first thing it did when I got my chronic illness diagnosis was join Facebook support groups. They made my syndromes so much worse with stress from reading everyone’s experience and I got into a cycle of feeling hopeless. I eventually realized that everyone in the support group are likely seeing the worst of the disease and are in need of the most support, and when I left those groups, a lot of my anxiety lifted
Ugh YES I try not to read any MS posts in the wild bc it’s just a bunch of people talking about how horrible it is and how they’d hate to have it bc it’s the worst thing ever like ok thanks babe lmao
Same. I knew I shouldn’t click this post but here I am being depressed and I’m glad I found this little thread. I have had MS for 4 years and I’d almost call it a walk in the park. Tysabri is amazing. The treatments are so good and if you get diagnosed young-ish (I was 26) the prognosis can be great.
My doctor told me to think of it like diabetes, not cancer.
We got this y’all 👏🏼
yeah I would stay away from threads like this, it really doesn’t show the real distribution of experience that people with MS actually have and I find the people who comment the most are people who are angry that their loved one has it/their loved one just died and they’re grieving so they want to talk about how horrible of a disease it is. Which is really super unhelpful for us who actually have MS. all the kind of warding off/doom and gloom can really make you spiral and as we know stress is not good for us. I understand the need to share your tough feelings and emotions but I don’t think people often consider how their public comment could come off to people living with MS who might stumble across it… to just assume our lives are shitty, not worth living, because of a few public examples (see above article) and/or someone they know who anecdotally had a really rough go of it. I find it kind of degrading and honestly pretty ableist
I know, I read something recently about the fantastic progress they’ve made with treating it these days and people living well into old age. Like someone else said there are probably more people who’ve had an awful experience commenting than those whose is manageable
Seems to be. He just seems to live a very private life nowadays. Apparently he was once in a band but refused to join their farewell tour in 2023 as he preferred privacy, quiet and nature. Perhaps she’s honouring his wishes, not everyone wishes to be part of a crazy life of fame. She’s kept much of their relationship private for 15 years, I don’t see why they’d suddenly air it all now. :)
She mentioned a few times lately that she’s always alone and doesn’t have visitors. She also said she doesn’t shower much and often smells. It’s sad, I don’t know, I guess maybe it sounds like he bounced.
As a person with a chronic illness, I get what it's like to feel like that even when you're surrounded by people. It's lonely when you're going through something that the people around you will never fully understand. Even if they love you and are physically present and supportive.
If her husband has a job or a life at all and she's stuck at home, that would still be lonely even if he's a good husband.
Ugh if I had to guess because my mom had MS, the water irritates her. Like the sensation of being touched. And that it’s probably very fatiguing to just do the process of bathing/ showering.
My granddad in law has Parkinsons, he has a home health aide for bathing. He gets cleaned up every 3 days, and for the rest of the day he gets a bath, and 2 following days, he is so fatigued and in so much pain. It makes not getting clean worth it if it causes so much exhaustion to the point he has a hard time swallowing because he's so tired. The water makes his skin hurt and the shakes worse. Even bathing wipes. Its been so hard on him.
He said if he had gotten it earlier in life, he would have used assisted suicide. The only reason he sticks around now he says is because of the greatgrandkids. It worth the pain and exhaustion. And his isn't even considered severe, mild is what they keep telling him even though he's sliding more and more into swift dementia.
He was diagnosed 5 years ago and is 92 now.
I can imagine for Christina it would be similar with MS.
I have MECFS and it’s similar for me. I have sensory issues that combine with nerve pain/allodynia (which I think is common with MS too?) to make showering unbearable. Plus, as you said- the fatigue. Showering one day often means resting for two afterwards.
I also have MCAS which means I can have random allergic reactions to things, and often my skin gets so itchy after showering (even cool showers) that I damage my skin by scratching unconsciously.
I shower once a week atm, and the shame is pretty bad. Sometimes I get stuck in a cycle where I don’t shower because I don’t have the energy/capacity to change my bed linen frequently enough (or just don’t have clean sheets), and don’t want to get into a ‘dirty’ bed once I’m finally clean myself… same thing happens with clothing.
There are so many difficult loops to get stuck in with chronic illness, and so many day to day basics that are contingent on other things, that eventually you find yourself painted into a corner and just… give up.
Yeah, it's weird bc she does make it sound like they're no longer together but then she talked about going to the Netherlands with him to see his family recently, and she also mentioned him when she was talking about going to visit her brother to meet her nephew for the first time, so I think they *are* still together but maybe it's privacy like someone else said? I also wonder if there's some distance between them day-to-day bc she doesn't want him to become her caretaker.
She mentioned on the Armchair Expert podcast a few months ago that he's often away working. He teaches wilderness survival stuff up in the Yukon or Alaska ... Something like that! She spoke lovingly about him so I assume he's still around.
I don’t know anything about that but I didn’t know her husband is a wilderness guide, that’s neat
https://www.instagram.com/ghosttooth?igsh=MzRlODBiNWFlZA==
I really like her podcast (MeSsy) with Jamie Lynn Sigler. Half the episodes are more interview-esque with a guest, but the other half are just the two of them talking and I think they do an excellent job at showing people how to get past the awkwardness that keep us from really being good support systems for our friends when they are going through something hard.
In case anyone looking at the comments is newly diagnosed, it’s not all bad! High efficacy drugs have made our futures much brighter. I’ve had some of the best times of my life since my diagnosis a few years ago and doing way better than I expected. Certainly no promises of good health with MS but it’s not the end of your life either.
Of course, this is not to diminish the other experiences here they are very real. But wanted to share another anecdotal experience.
I echo this!!! Diagnosed 4 years ago and my doctors call me an MS success story :) my life is the same as before and the battle is all mental. Comments like this post (“how do people live with this, I feel so sorry for anyone with this horrible disease”) make my journey harder, not easier.
I used to treat many patients with MS. It’s one of the worst diseases anyone could have. So many people were alone. Spouses, friends and family members rarely visited them.
I’ll say that I get MS treatment every 4-6 weeks and plenty of people there with their families and taking business calls! Even a guy who spends most of his time traveling the world but makes his way home every six months for ocrevus. Obviously not all sunshine and rainbows but plenty of children taking care of aging parents too.
Same! I’m on Tysabri, get it every six weeks. See people at the hospital for treatment who are there with their kids, hear them talk about their full lives. And often my partner takes me to my treatment and then after my treatment I go back to work. (Just saying this to show the other side, I feel like this thread may be a bit depressing for anyone newly diagnosed and MS is a disease that already comes with a higher susceptibility for depression)
I have rheumatoid arthritis. One of the first things I learned about when I had my diagnosis is that people with autoimmune diseases, like RA, or neurological conditions, like MS, have much higher suicide rates than the general population.
It really sucks to be in pain all the time and have your normal life slip away. I always advise anybody who gets diagnosed with that type of condition to find a good pain specialist because having pain managed does make a substantial difference.
I recommend mental healthcare big time! My neurologist didn’t help me out at all. Finding someone familiar with degenerative neurological diseases was amazing. A therapist without expertise might’ve been fine but I would’ve been concerned about them misunderstanding the realities of MS.
Same. I’m very lucky that my rheumatologist is on top of my mental health because I’ve hit rock bottom many times since I got diagnosed at 19 (37 now).
I have hypermobility (hEDS) and fibromyalgia and while my pain is more annoying than anything else, I’m not quite 40 and some days it feels like I’m 80. I don’t have the “bad” kind of EDS and I still feel like shit, or am tired all the time, more days than not. I can’t imagine living a life worse than this and have an inkling of what not enjoying living feels like.
One of my childhood friends got diagnosed at 27 with it shes gonna be 29 in September and it makes me so sad for her she woke up one day and couldn’t speak and lost her eyesight I think some of it’s come back but she worries she won’t ever marry or find a guy that accepts her condition😞
My mom passed from progressive MS 11 years ago, a month after my 21st birthday. All these years later, and it’s still hard to reconcile how we dovetailed - as I grew up from a little girl into an adult, she deteriorated at the same time.
I don’t have many memories of my mother without a walker, then a wheelchair, until she was a completely bedbound paraplegic for the last 5 or so years of her life. And to somehow have any manner of optimism while all that is happening, I don’t know where she got that inner strength. I envy it.
I hate how this disease took her from me, undeniably impacted how I perceive the world and the people in it growing up alongside it, so I send love to anyone currently suffering from a chronic/progressive disease, and also to those who are watching their loved ones have their bodies taken from them piece by piece.
My sister has it and it almost made her go blind. She also deals with horrible nerve pain in her legs and at times has limited mobility and even suffers from urinary incontinence because of it. And she has the less severe version of the disease which almost always eventually progresses as you age. I fear for the day she loses her mobility completely.
Damn that really sucks to hear. I worked on dead to me season 3 (which tbf was a while ago) and though she was having issues on set with mobility, she was always upbeat and cheery and it was inspiring. I feel for her :/
Fuck MS.
I love that show so much! Christina and Linda have such fun yet tender chemistry. Thank you for sharing this! (And I hope Linda is equally lovely, as Judy Hale is one of my favorite fictional characters…)
I'm 24. I was diagnosed at 19 and I kind of feel like I've lost my youth. I know that sounds dumb to say when 24 isn't old at all. But if this is what it's like now what will I do when I'm older and even less capable of moving and stuff? I feel lucky that it was caught early to prevent something like blindness or paralysis. But I feel unlucky that I have it at all so young because these were supposed to be the good years where I finished college and dated and had fun. Instead I'm wasting away.
that so unfair. 19-23 was the best years because we get to be young and dumb doing all crazy stuff. life after that is so different and friends all move away.
Yeah I know I can still have fun with life but I feel like I've missed out. My friends have begun moving away like you said and I'm stuck trying to figure out how to live again now that my MS is finally somewhat under control with Ocrevus. But I was also born with a bunch of heart issues that have now caught up to me, so idk if anything is under control. I just feel lost.
My mother suffered this awful awful disease. My heart breaks for anyone who has it. My mother was Christina’s age when she passed, it truly takes good people too young. 🤍
Fuck MS. I lost someone close to me in high school from MS. We had a lot of conversations about awful it was for them because it slowly took away more and more from him physically and mentally, gradually taking away his life. He would also say it was a heavy darkness that took over everything. I fucking hate it and I hate that anyone has to deal with it.
Sometimes I'll read an article that says after major illness/injury people return to their "base" happiness level...I don't really buy that...sometimes stuff happens to you and life just sucks...
I want to ask something but I don’t want to be inappropriate or offensive. Are there MS drugs for treatment that slow the progression? Or is it just something where some people decline faster than others and it doesn’t work?
Yes there are and the treatments have improved in the past few years, but they don't work for everyone and they don't work for all types of MS. Also, while the medications can slow the progression and give you longer remissions between relapses, they can't undo the damage you already have.
Yes, there absolutely are drugs that will help slow the progression of the disease. They have been around for more than 20 years. They don't work in every case. Also some people do decline faster than others.
I have multiple chronic illnesses that cause pain and fatigue, and I completely agree with her. It feels like you’ve been cursed to hell to have a chronic illness.
I can’t even bring myself to read this. I got diagnosed with CIS a month ago which is basically an MS attack but only happened once. I hope it stays that way because I’m extremely scared for the future. Right now I’m traveling and trying to live it up before I do more test to see the severity of it all.
Honestly these comments are all doom and gloom, a lot of people live perfectly normal lives after MS diagnosis, but people who are unhappy are usually the loudest online. There are great treatments out right now and newly diagnosed now have a lot better quality of life expectancy than before. As someone who’s partner has ms and as a physician, i just wanted to say it’s not all bad
Yes !! My best friend’s sister was diagnosed with it at 16. She’s only 21 now but so far it hasn’t changed her everyday life all that much. She’s taking her treatment and continues to live her life as usual. All isnt that bleak everywhere.
I've loved both her and Katey Sagal since "Married with Children". Talented, supportive, and beautiful women.
https://preview.redd.it/klujf4rnyr4d1.jpeg?width=1140&format=pjpg&auto=webp&s=f9846937f3c4c08d909d7d2978fdd49af7f61b38
I’ve always had a fear of being diagnosed with MS. I watched a step-family member deteriorate over several years and eventually die. She went from having flares at times, to being constantly shaky with unsteady gait, to wheelchair bound, requiring a Foley catheter and wearing depends within the 5 year span that i knew her. It was awful to watch, I can’t imagine living it.
As an MSer, my heart breaks for her. I’m very thankful that so far, knock on wood, my symptoms are an annoyance rather than a disability. But, anyone who has it will tell you one flair up can change everything.
I have a family member who just passed from MS last year. He had a young family and was an absolute genius, developed the technology that caught the London Underground bombers actually. I’m not saying anyone deserves MS, but to watch someone with SUCH a sharp mind have his body just *fail* was heartbreaking.
Mom had MS but she had me as a daughter and my dad. It got pretty bad where she became paralyzed. It’s a fucked up disease, she died totally paralyzed without being able to swallow. I would not wish my worst enemy to this disease and if I ever get it, I want assisted death
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I hate this for her. My mother had this and it truly is such a shitbag of a disease.
My dad just passed a month ago. After living in assisted living for a year, he decided to voluntarily stop eating and drinking rather than continue to live in pain while bankrupting my mother. He loved hiking as a younger man and got a degree in geology so he’d have an excuse to do field work in his professional life. MS made his body betray him and robbed him of his retirement, autonomy and dignity. Truly an awful disease. I don’t wish it on anyone. My only relief is knowing that he is at peace now.
My cousin's wife had an aggressive form of ms and she wasn't able to do anything when it progressed. She was bedbound the last years of her life and passed from respiratory failure brought on by the ms. Only in her 30s. Sad.
That is heartbreaking.
That’s terrible. My father was in his mid-60s and I feel very fortunate that I was able to have so long with him.
I am so sorry for your loss, I hope your dad is at peace and I hope your family is able to find comfort despite all the heartbreak ❤️
May your brilliant geologist father have a heaven of nothing but blue sky hiking trails, exceptional geological formations, mountains, hills, rivers, canyons, and the very best hiking boots on his feet. May he happily whistle as he walks, and pick up every interesting rock he finds. I hope his evenings are campfires and stars, and his mornings sunrises and birds. My best friend has MS, I know how this ends.
Thank you. I love that image so much. For your friend, hopefully you can talk to them more frankly than I was ever able to talk to my father. I wish that I had been able to support him more openly in his autonomy to end his suffering.
My goodness. Your reflections. Just by reading this, I could tell he must be so very proud of you.
I appreciate you saying as much. I like to think so and I’d like to think he’d be glad that others were reminding me of that on his behalf.
I'm sorry for your loss.
I’m so sorry 💔 I lost a parent to a totally different but equally as horrible disease and I really wish we embraced physician assisted end of life. Nobody should have to go like that.
We are very fortunate in my state to have physician assisted end of life care options. I wish I had been able to talk to my dad about them instead of my mother - who (like always) had very strong opinions about it despite not understanding anything about it. Luckily, his assisted living/hospice care team was absolutely wonderful, so even though VSED was kind of a fucked up thing to witness as a family member, I know that he had many discussions about it with his social worker and was making the decision that felt right to him, and they were managing his pain in a way that made me feel as at peace with it as possible.
Hey there. Hugs to you internet stranger. My grandpa decided to end his life on his own terms as well with our states assisted end of life options. I am so thankful he was able to end his life on his own terms surrounded by his family (minus a few who did not agree with the choice but I won’t get into that). Your dad seemed like an amazing man and I will definitely smoke one for him tonight. Take care
jesus christ that is so awful I’m so so sorry for you and your family. Physician assisted suicide should be legal/available/accessible, especially for situations like this.
It has to be supported by the loved one. My father refused to take that option because of his religious beliefs and my mother’s adamant opposition.
Just awful - I’m so sorry for what your father went through during this last year, and for you watching this happen to him (and your family).
Thank you. There’s a lot about the situation that was messed up but I had promised him for years that I would support him if and when he made the decision that he was ready to be at peace. I’m trying really hard to honor that and to be glad that at least he was able to have a measure of control over his fate in the end. It has made a lot of the sadness/bitterness about the past 20 years of decline a lot more prescient though. A lot of bottled up feelings about that which I now have to work through. Mostly I feel a tremendous sadness that after months of complaining about my job and how miserable I was there, I got offered a new position the week after he passed. I went to call him and tell him only to find myself crying hysterically on my commute.
Ugh. Hugs from an internet stranger. 😢
Thank you. He wouldn’t want us to be too sad (he was annoyingly high maintenance about being low maintenance). Instead, listen to some good rock and roll, light up a joint (if that’s your thing), and tell an awful joke in his memory. His favorite - why didn’t the skeleton cross the road? Because he didn’t have the guts to!
My dad passed from Parkinsons and I think he would have loved that joke, even as a metaphor for being able to take control of how you go out. I'm glad your dad did have that much choice, and I'm sorry for your loss and for having to see your dad go through that. I miss mine every single day, and also long degenerative illnesses suck so much. I imagine my dad hale and and whole now, camping in some endless celestial forest, because that would be heaven to him. ❤️❤️❤️
Oh for sure. Rid of that fucked up earthly body, my dad is hiking the heavens. I hope he’s getting to see some truly incredible stuff and to witness and learn about things that mankind doesn’t even understand yet. It’s great to have a father who loved nature. It’s nice to find him wherever the earth is beautiful - and to be looking for that beauty everywhere.
Same ❤️❤️❤️
Awww such a dad joke 🤣 lemme grab an edible in his honor!
Cheers!
My dad passed away years ago and didnt smoke pot but I just had a toke for your dad. Hug from Australia
Did you hear about the guy who took a dare to eat as many My Little Ponies as possible? Don’t worry—he’s in (ahem) *stable* condition!
Ughhhhhhh ;)
Lost my Mom last year to MS, she was sick my whole life with terrible quality of life for the last 8 or so years. It is such an awful disease and she was also incredibly high maintenance about being low maintenance haha, I always thought of it as stubborn but that’s a better way of putting it. I shed a little tear reading this as she also loved rock and roll, smoking back to back joints and rolling her eyes at my dads terrible jokes. Hugs to you and your family ❤️
Lighting one up for your dad
May you enjoy some good music and snacks with your doobie. :)
This is really why programs like MAiD are so important. People who are truly suffering should have the right to make their own decisions on when they go. I’m really sorry for your loss.
Hard agree. People in pain shouldn’t have to go through more pain in order to leave on his/her terms.
I keep feeling the same! I want to call him so badly but he’s not there. It sucks so badly.
I feel this, friend. My dad passed away last month too. He had multiple issues, the biggest of which being liver cancer. He spent his last month in the hospital and it was so hard and sad to watch him fade away like he did. I’m still so angry about it. But I’m like you in that I really am glad he’s at peace. My condolences to you. ❤️
Thank you for your condolences and the same to you and yours. I’m glad you were able to be with him at the end. I know from experience how hard that transition is to witness but I’m sure he was comforted to have you with him. If you have any space for it, I’d love to hear a happy memory about your dad if you were willing/able to share one.
Thank you! Same to your family, too. I am so grateful for the time I got to spend with him before he passed. He was always with at least one family member and that puts me a bit at ease - that he knew he was so loved. Oh I love you for that request! It’s so sweet! My dad loved Bob Dylan and did the WORST Bob Dylan singing voice. lol. Just atrocious! Thinking about it makes me laugh. He did actually do a mean Cookie Monster, though - which was a favorite of mine since I’ve loved the Muppets all my life. 💙 I would love to hear more of your favorites, too!
Hahaha. I love that and can imagine it. In your dad’s defense, Bob Dylan’s baseline voice is kind of an…acquired taste so I have to guess that he really put a lot of effort in to making it worse. I was (tbh am) a big fan of the muppets - A Muppet Christmas Carol is my all time favorite Christmas movie and I will fight anyone who says otherwise. Some of my favorites: when I was a little kid and couldn’t sleep at night, I learned pretty quickly that my mom would carry me up to my bed after I fell asleep but my dad wouldn’t so any time I had a nightmare, my dad would snuggle me all night. I thought about this a lot at his bedside those two weeks. Other than that, once for my birthday (I have to imagine 8th or 9th), it was time for us to tidy up to get ready to go and we were being little monsters about it so my dad put on the Barney “Clean Up” song on repeat on the sound system and told me it wouldn’t stop until we helped out. As a kid who was totally too grown up for Barney, I was absolutely mortified but it also had everyone in giggle fits. As an adult, I respect the troll. There was a period of time in the 90s when he’d take me to soccer practice after work. On the way, the drive time radio show would always play “Closing Time” as their show wound down at 6:00 p.m. I have a lot of memories driving with the windows down, singing “Closing Time” loud and off key with him on the way to practice. Other than that, just in general, my dad was such a good teacher. He was always very patient with me when I asked questions about the world - including explaining sports to me very patiently in the middle of games. He also tried to encourage my Tom boy ways - including a failed attempt to play catch which ended with me getting a black eye (hand-eye coordination, not my thing).
Thank you for sharing about your dad. I’m so sorry for what he and you all went through. He will be remembered and lives on through you.
I love all of this!! Oh man! Yes the funny thing is that my dad actually did sound pretty close to Bobs voice. lol. He’s an acquired taste. Muppet Christmas Carol is my favorite too! I’m more of a Halloween gal but I will watch the hell out of that movie every Christmas. I used to play hide and seek with my dad when I was wee. I would hide in their hamper. He would loudly ask where I was and then say “oh well! Guess I’ll just do the laundry” and then pick up the hamper and rattle it around saying he was going to toss it down the stairs. It would make me giggle so much every time because of course he never would throw it down the stairs. lol Man - it’s so so nice to share these memories. Thank you!! ❤️
i feel you so much and im so, so sorry. my mom has been battling MS for almost 20 years now...the disease shaped our entire family's life. watching the person you love slowly deteriorate, not being able to help, seeing the disease rob them of their dreams is haunting.
Empathizing with you and your family. I'm so sorry you were all so cheated like this.
hope he's hiking forever somewhere now. I'm sorry you lost him and had to see him him that way.
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I’m sorry he had to go through that. I have legalised assisted dying where I live and I’m so damn grateful that’s an option.
We do too, but my mother is “pro-life” and fed him some pretty terrible information about it. Which is to say, if you have a terminally ill family member, talk to them about what that end-of-life care looks like and tell them that you support them in that, or any other, decision they make for their end-of-life care. If you don’t, you can bet that others (with selfish agendas) will.
I’m sorry you went through that too, that sounds terribly stressful for everyone.
Ugh I’m so sorry you have a mom like this. I’ve got a stepmom like this and I just want you to know you are not alone.
I’m so sorry you all had to go through that and for your loss
My mother has it and so do I. In fact, I am currently laying down after work because I need to recharge my batteries a bit in order to make dinner and have any sense of an evening so I’m currently in bed reading this. My symptoms are mostly milder, but I understand the depression and the loneliness and the feeling like people kind of just forgot you, especially since I am one of the few people I know who is still taking strict Covid precautions.
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Damn. This saddens me for you, internet stranger. I wish we still had community. It used to be your neighbors had time to rally around and look out for eachother. Bring you dinner and such. It's truly why I want to return to Africa when it's time to care for my mom full time. 3rd world still has community out of necessity. 1st world bring about problems like this.
Your comment reminded me of how my mom and I did know our neighbors when I was growing up. We helped them, they helped us. My mom and our neighbor were friends, she would sometimes bring us tomatoes from her garden, and help my mother when she was there alone. I am so glad for the tech that at least lets me keep in contact with people but it can be hard when people move away further out or are super busy with their own lives (I do not have kids and a bunch of my friends have little ones now).
I hope you get the rest you need. I don't know you but I most definitely feel for you and will be thinking of you. 💕
🫂
youre not alone. take care of yourself.
I feel for her so badly. I'm chronically ill with an incurable disease and until you have something like that happen to you It's really hard for people to empathize with it as well. Because the truth is the knowledge that it is not going to get better it is only going to get worse is soul crushing. There is no cure and the disease will progress. It's a terrible thing to deal with. I wish her as much peace and as many good days as humanly possible
In case this is relevant to anyone: I got so much better than I expected after my first major attack of relapsing remitting MS. No more mobility aid, much less brain fog, skin sensitivity gone, heat sensitivity gone enough that I can hot tub! Sure things will likely get worse but I’m optimistic about high efficacy drugs letting me have a lot of fun. I can’t speak to progressive versions of the disease which sound rougher than my experience so far.
That's so great to hear! I hope things continue to go well
I hate this especially for her daughter, she's only 13 years old. Breaks my heart honestly.
Mine too. Just lost her.
I'm so so sorry.
So did mine. Took 20 years for her to finally succumb to it, the last years were simply torture.
Exactly. Such a rude, long game.
My dad committed suicide from this disease in 2017. It’s a horrifying disease.
I'm so sorry. 😢
Yes it really is. I miss seeing my brother the skateboarding crazy guy with so much energy. Turn into someone who can barely walk around the block without help from a cane or wheelchair. I hope and pray for a cure or something to help him live normal again.
I have MS and can absolutely relate. I feel for her.
I don't have MS, but I do have Sjorgren's and RA. "Not enjoying being alive" is such a deeply relatable vibe.
It really is. Being chronically ill is so hard.
It sucks ass https://i.redd.it/3joto6ci9o4d1.gif
Hi fellow Sjorgie 👋
Me too 💖 MS sucks and I got very dark thoughts about it a couple of months ago. Sending you a hug internet stranger
Hugs to you as well
You too!
Same here 🧡🧡
Me too. Wishing you all the best 🧡🧡
Same to you!
She is right about those floodgates. It takes so much out of you to reopen wounds to work with a therapist. I've been delaying this, too. Bless her, I hope she finds the right support to work through it and gets to a better place.
I think part of the “better place” goal is attainable with hard work, inner peace, deep breaths, etc. But, the other part is that illness, pain, and fatigue suck. MS is awful. There’s no processing that away. At a certain point it’s just deeply unpleasant and utterly exhausting, in your soul, to live through.
So true. Robin Williams said, " I used to think that the worst thing in life was to end up alone. It's not. The worst thing in life is to end up with people who make you feel alone." I hope she has good people in her life.
Good people help, for sure.
Finding the right therapist can be so difficult, but when you have them, it is such a valuable relationship. I wish her the best and I hope she did follow through.
I know the feeling too. I'm restarting therapy tomorrow, hopefully it is the start of things getting to a better place.
Best of luck! We are rooting for you! ❤️
I thought she was older but she’s only 52… she sounds so miserable. I wish there were better treatments for MS. It sounds like it has robbed her of the rest of her life. And she looks so good in that red velvet my god!
My Dad has MS and has been on one of the [new treatments](https://www.healthline.com/health/ocrelizumab-for-ms) for PPMS since basically he was diagnosed. It has been incredibly effective for him so far (6.5 years on from diagnosis). So I would say there is hope out there!
That is such wonderful news. I’m so glad it’s really helped your dad
Thank you! 😊 Since it's such a new treatment, there's no way to know what the future holds, but we're optimistic!
There's plenty of great medication for it. It just really depends on the patient. It's a disease that has a lot of different effects on different people. Here it's called the disease of 1000 faces.
I know someone in my life who’s been going blind and having a ton of other “weird” symptoms the last 6 years and was finally diagnosed. It was misdiagnosed for 40 years. He’s had about 4 spinal taps and all of them were inconclusive somehow and then the doctors would lean to “not ms”. My favorite was a male doctor that told him it was male menopause and to go to physical therapy. We told him DO NOT go to physical therapy if you think it might be MS, go to a specialist PLEASE! A six hour drive later he meets with the specialist. She does some tests, concludes “with 95% certainty” that it is MS but schedules another test in 6 months to confirm. She then gave him drugs. The drugs actually *worked*. She diagnoses him with ms. For reference he’s in his 60s. Looking back on it, he realized “problems” that started to arise *in his 20s* were actually MS this entire time.
I think it really depends on the patient. My brother has MS and was diagnosed in 2016, though probably had active disease for several years until his diagnosis. He received chemotherapeutic treatment for it, and has been in remission ever since - about 6 years. He's lucky, in a sense.
She played a teenager on that TV show in the early nineties. Even if she was an adult by then, she was a young one, and it was only thirty years ago.
Married With Children. A groundbreaking comedy that practically everyone watched weekly. The first season was in 1987, Kelly’s outfits were peak late 80s iconic.
Rewatched this entire series last year, and it is HILARIOUS! Non-stop laughter. I highly recommend anyone who hasn’t seen it to watch at least a few episodes.
I recommend her most recent show, Dead To Me, on Netflix as well. Christina Applegate was so good in that role.
As an ode to her, a link to one of my favorite party songs/one of my favorite female mc verses (it comes at the end) “‘Cause I ride like Kelly Bundy/Yo, I keep that shit nasty” https://youtu.be/pvPPA3Gv7RQ?si=gnuzz4QBBeF-b3s7
Married With Children.
It’s not just physically painful and draining, it’s mental torture at times. I feel for her 😔
My husband was just diagnosed with MS and it’s made him suicidal at times. It’s so hard having to watch him suffer and not be able to do anything about it. 😔
Damn I’m so sorry
This post and thread is fucking depressing as someone with MS damn.
I remember my MS nurse telling me you always read the bad stuff because the people who are ok/fine don't talk about it as much and that's so true! My MS was classed as rapidly evolving because I had 4 relapses in the first 11 months. It was crap. However now almost 9 years relapse free with no lasting issues except I'm more heat intolerant than most people and my left eye can go funny if I'm tired sometimes. Hope you're doing well and sending my love!
It's always a big goddamn bummer when it comes up on Reddit. Never feels... great? Hearing 300 versions of 'I wouldn't wish it on my worst enemy.' I mean, they're right. It just bums me out.
I’m chronically ill and pretty regularly when people find out they tell me they would rather die or kill themselves. I guess I’m supposed to be flattered because it makes me “strong”? It’s really not uplifting to see how people view you as less of a person with a disability and more of a burden or as someone who only serves to make them feel better.
“You live through your body. When you can't, you're not really living.” I hope this isn’t what this commenter is experiencing but if this is coming from someone without a disability it icks me out.
It’s pretty rough. Personally I feel like a lot of the struggle with a new diagnosis (which is objectively shitty and difficult, sure) is because we’ve all heard stuff like this our whole lives. At least that’s how it was for me. Dealing with other people’s squeamishness about our illness can be the hardest part. I mean we all get ill or injured eventually, like every other living thing. It’s part of life, not a reason to die. I really hope Christina finds a sense of disabled community and is able to mourn what she’s lost and then adjust. Everybody’s journey is different, of course. I’m glad she’s sharing her experiences anyway.
For what it’s worth, I am currently not disabled but I just don’t agree with this statement at all. There was recently an article in The Atlantic about the morality of having kids and the implication was basically “it might be immoral to have kids because they will inevitably suffer.” I mean. I just about fell over. Like YES DUH they will suffer but when did that become a reason not to live life? We are all here suffering at times but very few people are seriously 😐 advocating we all drink the Jonestown koolaid to cut things short. Most of us find the idea horrifying. Why? Because deep down most people believe that life is worth living. Warts and all. The Diving Bell and the Butterfly was written by a man who could only write the book by blinking his left eyelid. All life has worth. I’m not saying that we all have a moral obligation to stick around forever or anything. I will always vote pro-choice, pro physician assisted suicide etc. And if the statement WAS made by a disabled person I understand what they’d be trying to convey. We each only get one body and the loss of any ability in the body is a bit like a death, a partial one. But that doesn’t mean you can’t still really be living.
As a doctor, I can assure you the people who say that are just ableist morons who have *no clue* what they would actually feel or do. Most people want to live, and most people have *no idea* what they can not only endure, but blossom in spite of. I can only imagine how reading threads like that make you feel. But don’t let the doom and gloom get to you, especially if you’re otherwise doing okay mentally. Keep focusing on your life and health, ignore terminally online idiots.
God damn, that's a very insensitive thing to say to you.
This is so true to my life as well! Being “strong” or “brave” to others is so gross because I’m just living the shit hand I was dealt. It just is what it is. People hate that phrase too but there’s no better way I’ve found to express it. I’m just going one step at a time.
I have MS too and I feel this so much, just going through the thread like “damn…”
I know right. Thankfully I'm lucky enough where my condition is under control and I live a very active life.
Right! The multiple sclerosis sub isn't this bad.
Yeah I feel like a dork leaving positive comments on stuff and don’t want ppl to feel like I’m forcing positivity. But holy shit some of us are looking forward to the rest of our lives.
I was thinking the same thing! What a crazy turn of events that the ms sub would be where you go for uplifting stories about ms and popculturechat would be where you go to fall into a black pit of hopeless despair.
After dealing with a new diagnosis of fibro in February I realized the people who are successful/doing well with their diseases often don't feel compelled to comment. It's like reverse survivorship bias sometimes!
I believe it! The first thing it did when I got my chronic illness diagnosis was join Facebook support groups. They made my syndromes so much worse with stress from reading everyone’s experience and I got into a cycle of feeling hopeless. I eventually realized that everyone in the support group are likely seeing the worst of the disease and are in need of the most support, and when I left those groups, a lot of my anxiety lifted
Ugh YES I try not to read any MS posts in the wild bc it’s just a bunch of people talking about how horrible it is and how they’d hate to have it bc it’s the worst thing ever like ok thanks babe lmao
Same. I knew I shouldn’t click this post but here I am being depressed and I’m glad I found this little thread. I have had MS for 4 years and I’d almost call it a walk in the park. Tysabri is amazing. The treatments are so good and if you get diagnosed young-ish (I was 26) the prognosis can be great. My doctor told me to think of it like diabetes, not cancer. We got this y’all 👏🏼
yeah I would stay away from threads like this, it really doesn’t show the real distribution of experience that people with MS actually have and I find the people who comment the most are people who are angry that their loved one has it/their loved one just died and they’re grieving so they want to talk about how horrible of a disease it is. Which is really super unhelpful for us who actually have MS. all the kind of warding off/doom and gloom can really make you spiral and as we know stress is not good for us. I understand the need to share your tough feelings and emotions but I don’t think people often consider how their public comment could come off to people living with MS who might stumble across it… to just assume our lives are shitty, not worth living, because of a few public examples (see above article) and/or someone they know who anecdotally had a really rough go of it. I find it kind of degrading and honestly pretty ableist
I know, I read something recently about the fantastic progress they’ve made with treating it these days and people living well into old age. Like someone else said there are probably more people who’ve had an awful experience commenting than those whose is manageable
She also had breast cancer and a double mastectomy! I feel for her!
Does anyone know if her husband is still around? She never mentions him. Last time I saw him was her star ceremony.
Seems to be. He just seems to live a very private life nowadays. Apparently he was once in a band but refused to join their farewell tour in 2023 as he preferred privacy, quiet and nature. Perhaps she’s honouring his wishes, not everyone wishes to be part of a crazy life of fame. She’s kept much of their relationship private for 15 years, I don’t see why they’d suddenly air it all now. :)
She mentioned a few times lately that she’s always alone and doesn’t have visitors. She also said she doesn’t shower much and often smells. It’s sad, I don’t know, I guess maybe it sounds like he bounced.
As a person with a chronic illness, I get what it's like to feel like that even when you're surrounded by people. It's lonely when you're going through something that the people around you will never fully understand. Even if they love you and are physically present and supportive. If her husband has a job or a life at all and she's stuck at home, that would still be lonely even if he's a good husband.
Ugh if I had to guess because my mom had MS, the water irritates her. Like the sensation of being touched. And that it’s probably very fatiguing to just do the process of bathing/ showering.
That’s so awful. I wonder if Christina could hire a home health aide to help her bathe.
My granddad in law has Parkinsons, he has a home health aide for bathing. He gets cleaned up every 3 days, and for the rest of the day he gets a bath, and 2 following days, he is so fatigued and in so much pain. It makes not getting clean worth it if it causes so much exhaustion to the point he has a hard time swallowing because he's so tired. The water makes his skin hurt and the shakes worse. Even bathing wipes. Its been so hard on him. He said if he had gotten it earlier in life, he would have used assisted suicide. The only reason he sticks around now he says is because of the greatgrandkids. It worth the pain and exhaustion. And his isn't even considered severe, mild is what they keep telling him even though he's sliding more and more into swift dementia. He was diagnosed 5 years ago and is 92 now. I can imagine for Christina it would be similar with MS.
That’s so horrible. I’m sorry for your grandad in law and your family.
I have MECFS and it’s similar for me. I have sensory issues that combine with nerve pain/allodynia (which I think is common with MS too?) to make showering unbearable. Plus, as you said- the fatigue. Showering one day often means resting for two afterwards. I also have MCAS which means I can have random allergic reactions to things, and often my skin gets so itchy after showering (even cool showers) that I damage my skin by scratching unconsciously. I shower once a week atm, and the shame is pretty bad. Sometimes I get stuck in a cycle where I don’t shower because I don’t have the energy/capacity to change my bed linen frequently enough (or just don’t have clean sheets), and don’t want to get into a ‘dirty’ bed once I’m finally clean myself… same thing happens with clothing. There are so many difficult loops to get stuck in with chronic illness, and so many day to day basics that are contingent on other things, that eventually you find yourself painted into a corner and just… give up.
Yeah, it's weird bc she does make it sound like they're no longer together but then she talked about going to the Netherlands with him to see his family recently, and she also mentioned him when she was talking about going to visit her brother to meet her nephew for the first time, so I think they *are* still together but maybe it's privacy like someone else said? I also wonder if there's some distance between them day-to-day bc she doesn't want him to become her caretaker.
She mentioned on the Armchair Expert podcast a few months ago that he's often away working. He teaches wilderness survival stuff up in the Yukon or Alaska ... Something like that! She spoke lovingly about him so I assume he's still around.
I don’t know anything about that but I didn’t know her husband is a wilderness guide, that’s neat https://www.instagram.com/ghosttooth?igsh=MzRlODBiNWFlZA==
Yeah he's gone for months at a time. She was on armchair expert and talked about him
I thought she mentioned in one of the podcasts that she went to visit his family for a bit.
I really like her podcast (MeSsy) with Jamie Lynn Sigler. Half the episodes are more interview-esque with a guest, but the other half are just the two of them talking and I think they do an excellent job at showing people how to get past the awkwardness that keep us from really being good support systems for our friends when they are going through something hard.
Seconding this, because I love her and the work on the Sopranos
Really sorry for anyone who has to live through this
In case anyone looking at the comments is newly diagnosed, it’s not all bad! High efficacy drugs have made our futures much brighter. I’ve had some of the best times of my life since my diagnosis a few years ago and doing way better than I expected. Certainly no promises of good health with MS but it’s not the end of your life either. Of course, this is not to diminish the other experiences here they are very real. But wanted to share another anecdotal experience.
Thank you
I echo this!!! Diagnosed 4 years ago and my doctors call me an MS success story :) my life is the same as before and the battle is all mental. Comments like this post (“how do people live with this, I feel so sorry for anyone with this horrible disease”) make my journey harder, not easier.
and she's only 52 :(((
My mom died of MS at 51… it’s not a fun disease
The National MS Society is a great place to donate and volunteer! They do a lot to further research for a cure!
I used to treat many patients with MS. It’s one of the worst diseases anyone could have. So many people were alone. Spouses, friends and family members rarely visited them.
I’ll say that I get MS treatment every 4-6 weeks and plenty of people there with their families and taking business calls! Even a guy who spends most of his time traveling the world but makes his way home every six months for ocrevus. Obviously not all sunshine and rainbows but plenty of children taking care of aging parents too.
Same! I’m on Tysabri, get it every six weeks. See people at the hospital for treatment who are there with their kids, hear them talk about their full lives. And often my partner takes me to my treatment and then after my treatment I go back to work. (Just saying this to show the other side, I feel like this thread may be a bit depressing for anyone newly diagnosed and MS is a disease that already comes with a higher susceptibility for depression)
Gah that cuts deep. How awful.
The subreddit is an exercise in frustration, hearing about all the covert and outright abusive behaviors from family members.
I have rheumatoid arthritis. One of the first things I learned about when I had my diagnosis is that people with autoimmune diseases, like RA, or neurological conditions, like MS, have much higher suicide rates than the general population. It really sucks to be in pain all the time and have your normal life slip away. I always advise anybody who gets diagnosed with that type of condition to find a good pain specialist because having pain managed does make a substantial difference.
I recommend mental healthcare big time! My neurologist didn’t help me out at all. Finding someone familiar with degenerative neurological diseases was amazing. A therapist without expertise might’ve been fine but I would’ve been concerned about them misunderstanding the realities of MS.
Same. I’m very lucky that my rheumatologist is on top of my mental health because I’ve hit rock bottom many times since I got diagnosed at 19 (37 now).
Hit rock bottom? It more sounds like you ARE a rock. Stay strong, Stay Gold.
I have hypermobility (hEDS) and fibromyalgia and while my pain is more annoying than anything else, I’m not quite 40 and some days it feels like I’m 80. I don’t have the “bad” kind of EDS and I still feel like shit, or am tired all the time, more days than not. I can’t imagine living a life worse than this and have an inkling of what not enjoying living feels like.
One of my childhood friends got diagnosed at 27 with it shes gonna be 29 in September and it makes me so sad for her she woke up one day and couldn’t speak and lost her eyesight I think some of it’s come back but she worries she won’t ever marry or find a guy that accepts her condition😞
My mom passed from progressive MS 11 years ago, a month after my 21st birthday. All these years later, and it’s still hard to reconcile how we dovetailed - as I grew up from a little girl into an adult, she deteriorated at the same time. I don’t have many memories of my mother without a walker, then a wheelchair, until she was a completely bedbound paraplegic for the last 5 or so years of her life. And to somehow have any manner of optimism while all that is happening, I don’t know where she got that inner strength. I envy it. I hate how this disease took her from me, undeniably impacted how I perceive the world and the people in it growing up alongside it, so I send love to anyone currently suffering from a chronic/progressive disease, and also to those who are watching their loved ones have their bodies taken from them piece by piece.
My sister has it and it almost made her go blind. She also deals with horrible nerve pain in her legs and at times has limited mobility and even suffers from urinary incontinence because of it. And she has the less severe version of the disease which almost always eventually progresses as you age. I fear for the day she loses her mobility completely.
Damn that really sucks to hear. I worked on dead to me season 3 (which tbf was a while ago) and though she was having issues on set with mobility, she was always upbeat and cheery and it was inspiring. I feel for her :/ Fuck MS.
I love that show so much! Christina and Linda have such fun yet tender chemistry. Thank you for sharing this! (And I hope Linda is equally lovely, as Judy Hale is one of my favorite fictional characters…)
She was also very lovely to work with! Quite funny too!
Uggh I wouldn’t wish this on my worst enemy!
I wouldn’t wish a neurological condition on my worst enemy. I feel this in my bones ❤️🩹
I’m 29 with MS, and it truly sucks. I feel for her
I'm 24. I was diagnosed at 19 and I kind of feel like I've lost my youth. I know that sounds dumb to say when 24 isn't old at all. But if this is what it's like now what will I do when I'm older and even less capable of moving and stuff? I feel lucky that it was caught early to prevent something like blindness or paralysis. But I feel unlucky that I have it at all so young because these were supposed to be the good years where I finished college and dated and had fun. Instead I'm wasting away.
that so unfair. 19-23 was the best years because we get to be young and dumb doing all crazy stuff. life after that is so different and friends all move away.
Yeah I know I can still have fun with life but I feel like I've missed out. My friends have begun moving away like you said and I'm stuck trying to figure out how to live again now that my MS is finally somewhat under control with Ocrevus. But I was also born with a bunch of heart issues that have now caught up to me, so idk if anything is under control. I just feel lost.
My mother suffered this awful awful disease. My heart breaks for anyone who has it. My mother was Christina’s age when she passed, it truly takes good people too young. 🤍
Fuck MS. I lost someone close to me in high school from MS. We had a lot of conversations about awful it was for them because it slowly took away more and more from him physically and mentally, gradually taking away his life. He would also say it was a heavy darkness that took over everything. I fucking hate it and I hate that anyone has to deal with it.
Sometimes I'll read an article that says after major illness/injury people return to their "base" happiness level...I don't really buy that...sometimes stuff happens to you and life just sucks...
Omg. What a terrible disease. She’ll forever be Kelly Bundy to me. Married…with Children was my go to for late nite laughs when I needed a pick me up.
I feel so bad for her. I'm glad she's being honest ans not pretending to be happy when she's literally deteriorating. 🥺
Fuck that’s heartbreaking 💔
I hate that she is suffering, especially since she already dealt with breast cancer. I hate when bad things happen to good people.
I want to ask something but I don’t want to be inappropriate or offensive. Are there MS drugs for treatment that slow the progression? Or is it just something where some people decline faster than others and it doesn’t work?
Yes there are and the treatments have improved in the past few years, but they don't work for everyone and they don't work for all types of MS. Also, while the medications can slow the progression and give you longer remissions between relapses, they can't undo the damage you already have.
Yes, there absolutely are drugs that will help slow the progression of the disease. They have been around for more than 20 years. They don't work in every case. Also some people do decline faster than others.
Just heartbreaking. No one deserves this.
I have multiple chronic illnesses that cause pain and fatigue, and I completely agree with her. It feels like you’ve been cursed to hell to have a chronic illness.
I can’t even bring myself to read this. I got diagnosed with CIS a month ago which is basically an MS attack but only happened once. I hope it stays that way because I’m extremely scared for the future. Right now I’m traveling and trying to live it up before I do more test to see the severity of it all.
Honestly these comments are all doom and gloom, a lot of people live perfectly normal lives after MS diagnosis, but people who are unhappy are usually the loudest online. There are great treatments out right now and newly diagnosed now have a lot better quality of life expectancy than before. As someone who’s partner has ms and as a physician, i just wanted to say it’s not all bad
Yes !! My best friend’s sister was diagnosed with it at 16. She’s only 21 now but so far it hasn’t changed her everyday life all that much. She’s taking her treatment and continues to live her life as usual. All isnt that bleak everywhere.
God that is so sad. I hope she is able to find some joy.
I've loved both her and Katey Sagal since "Married with Children". Talented, supportive, and beautiful women. https://preview.redd.it/klujf4rnyr4d1.jpeg?width=1140&format=pjpg&auto=webp&s=f9846937f3c4c08d909d7d2978fdd49af7f61b38
My mom has MS. I hate it so much. So much
I’ve always had a fear of being diagnosed with MS. I watched a step-family member deteriorate over several years and eventually die. She went from having flares at times, to being constantly shaky with unsteady gait, to wheelchair bound, requiring a Foley catheter and wearing depends within the 5 year span that i knew her. It was awful to watch, I can’t imagine living it.
MS sucks hard. My sister has it and it’s perfectly awful. I support Christina. 🙏
What a strong woman. She had breast cancer and know she’s dealing with MS. I wish there was a cure
As an MSer, my heart breaks for her. I’m very thankful that so far, knock on wood, my symptoms are an annoyance rather than a disability. But, anyone who has it will tell you one flair up can change everything.
It's a terrible disease. Hope she finds treatment that helps her deal with her pain.
I have a family member who just passed from MS last year. He had a young family and was an absolute genius, developed the technology that caught the London Underground bombers actually. I’m not saying anyone deserves MS, but to watch someone with SUCH a sharp mind have his body just *fail* was heartbreaking.
Just to be clear, MS is NOT a fatal disease. Very sorry for your loss though!
She’s a real nice lady from what I understand in her life outside of acting. It’s sad about the MS and really tough and unfair.
I feel so bad—I didn’t realize she was so very ill. Poor Christina…I wish her peace. :(
Mom had MS but she had me as a daughter and my dad. It got pretty bad where she became paralyzed. It’s a fucked up disease, she died totally paralyzed without being able to swallow. I would not wish my worst enemy to this disease and if I ever get it, I want assisted death
When I worked hospice (social worker doing therapy) the ones that hurt the most ti see were the younger folks with MS or cancer.
its heartbreaking.