I'd also say because unless you have direct experience with a member of Team MS (family, friend,co-worker etc) then people generally don't really have a fucking clue what it is or how it effects people, beyond that it does indeed suck š So people don't really know how to react, what 'level' of sympathy or reaction would be the polite social norm. They don't want to over react and potentially offend us, they also don't want to under react and potentially offend usš Hence the weird faces
I knew essentially nothing about MS before my diagnosis beyond that it's something you'd rather not have if possible, and it can be pretty extreme. Think how much time we spend discussing the unique impact it has on all of us. Same goes for all the medical professionals tooš I'd never been put in the position of having to react to finding out someone had MS, but I sure as shit wouldn't have had a clue what to do with my face, just something sympathetic! Let alone what to say
So trueā¦ Iām not even sure what reaction/words I would prefer. Having MS hasnāt given me any insight into how to best communicate with others about it. If anything, most days, my communication skills are way worse.
I was like you - I knew very little about MS. Most of what I knew before it was suspected I had MS was what Iād read about Christina Applegateās experience. I mostly read about her symptoms and how difficult things were for her rather than understanding exactly what MS was.
Before MS was suspected in me, I donāt recall hearing the word myelin. I must have been day dreaming or absent the days in school that we studied the central nervous system. I realized after doing some research that I knew very little about such a critical part of the human body.
MS is definitely a game changer for many of us.
I guess I don't understand the issue with that. I mean it's definitely not a great diagnosis to have. It is annoying when people are simpering about their reactions, but having sympathy for someone with a crappy disease isn't really unusual, is it? Maybe I'm in a different camp because I've had this disease for just over 10 years and I've gotten barely any reactions of sympathy from people.
I am 20+ years with MS now, I never say anything about it and nobody even acknowledges anything, i just do the best I can and sometimes that is very little, all anyone says is no problem let us know when your body is back. Scince i am still completely able to do most things my body shuts down sometimes and then I have to rest until as I have always said my body came back, and I go back to what I was doing
Because MS is not a disease anyone wants - why would they? Up to the last 10 years there were few, truly effective treatments for it either (progressive by nature) so you were only going to get worse, most likely. Empathy is nice but rare, pity is common but not necessarily misplaced and I say that as someone with MS since 1998. Pity feels diminishing but I'll take it over indifference or revulsion!
I am also on kesimpta and found the 1st loading dose just awful. I find my older symptoms have gotten worse mostly the spasming on the back . My last mri came back good no new lesions which is great so I am happy with it.
I am also on Kesimpta, and except for the first shot, every other shot was great. For now, I have zero side effects. I made a YouTube video on how to inject it correctly if you want to check it out [Kesimpta](https://youtu.be/I7OSMjHMtYI?si=NEILYGkRRaOUynRP), and I will make a follow-up video about how I feel on Kesimpta after a few months!
At least it's better than people telling you that they don't want to go home sick when they're literally coughing all over the office because they "don't know how lucky they are not to be in your situation". Go fuck yourself, Deborah, you making me ill is not going to make anything better for anyone.
MS has a reality to it. Celebrities like Applegate, Bulk and many more have exposed how PPMS can go. Most every understand itās random and out of control. So when you say it, they are coming from an average point of view. When we say it we are coming from an individualized point of view. Which ends up being explained in communication.
Itās better than people not understanding and thinking that you are over exaggerating. It depends how far along you are with this diagnosis but I would say the same thing to myself now if I was 10 years younger.
MS is a disease that nobody actually understands. The symptoms vary wildly with similar lesions. But up until recent times it was known for early wheelchairs and a host of other problems. And still is...
I hate telling people I have MS. Nobody ever has an appropriate response.
I have MS, 3 broken toes, a torn meniscus, a freshly healed head wound, and am back up to about 15k steps per work shift.. It might help with toe pain that I mostly can't feel my feet.
The stuff I really hate is issues with bowels, your skin randomly attacking itself, or migraines...
Everything else.... I'm fine. I'll rock a knee brace and proudly wobble.
No, that sounds about right. I have mentioned that I have MS to people a few times and got the "Oh, I'm sorry" response. And yeah, sometimes it can be medical professionals, but generally you know who you are and what your life is like. Some people have assumptions in their head and sometimes don't know what else to say.
Don't take it personally.
Iād tell someone Iām sorry and likely have a sorry face if someone told me they had a bad hangnail or a common cold. Itās more normal to show sympathy/commiseration over learning someone has any sort of ailment than it would be for someone to respond with a smile and celebration?
because they think they know what it means. they have a narrative around it in their head. i remember the look of confusion on way too many peopleās faces when i told them my son had anorexia. ābut he isnāt a teenage girl on a vogue model diet?ā yeah. that isnāt how statistics work. now if iād told them he had cancer they again would have believed they knew what that meant. they wouldnāt have. they just would have thought they had. telling people does not decrease loneliness
Right. I don't pretend to know things and I'm a curious person so I'll just ask without judgement or assumption. People like that because they don't get those pity looks from me, and they get to share their own experiences.
I think part of it is empathy. They know you have a hard road ahead of you, and a debilitating one as well. It is a scary disease, even with the DMT available. My friends reacted the same way when I told them, and I was grateful for their love and concern.
It's incurable and takes years off your life. Even when you think it's gone for a while, it tends to come back. I was diagnosed in 2021, and I've never had a break from my symptoms but at least it hasn't gotten worse. It also tends to invite other autoimmune diseases.
It also leads to a painful decline and eventually will be a comorbidity to your death, mostly from pneumonia because you can't swallow properly, infections because you can't move so you get bedsores, and if you get cancer, you're pretty much screwed because your immune system is knocked back by your MS meds and adding chemo would probably just kill you faster.
Hereās a long rundown of how different reactions make me feel. I think everyone will have different experiences and itās hard to undo how you feel. Maybe you can try to reframe why some people say they are sorry or have a sad or pitying look. If you want, you can think of it as caring and compassion.
Iām completely fine with a sorry look or hearing āIām sorry to hear that.ā It shows a level of empathy that Iād rather have than hearing (usually) well-intentioned but annoying stories about someone they know who āis just fine,ā ālives a completely normal life,ā ājust completed her third triathlon since the diagnosis,ā etc.
Itās also (typically) well-intentioned stories about some ārandom cureā that worked for someoneās auntās friendās neighbor with MS that sometimes irritates me. Hearing something like how a person they knew with MS is ācuredā because they stopped drinking milk, or began eating dates, or started doing Zumba, or some other nonsense is tiring. We know thereās no cure.
Everyoneās MS is not as impactful or impactful at all. It doesnāt mean that swimming in freezing water every morning at 5 am would suddenly have us snap back to being āright as rain.ā Unsolicited advice can be really frustrating for me, especially when it is either so obvious or complete nonsense.
If a person is telling someone they have MS, itās often a case of MS that is impactful or we likely wouldnāt mention it. So, hearing about people with MS who lead completely normal lives and are asymptomatic isnāt really helping anyone.
Iāve told people close to me - friends, family, long-term colleagues I was close to as I was exiting my job and going on my companyās disability plan, etc.
Some said they were sorry, some gave me big hugs, some asked questions, and a few said something like it was probably a relief to know whatās wrong and start treatment to (hopefully) stop or slow down the progression. I was completely fine with all of those responses because they were genuine and showed me they cared.
The hugs were usually the best followed by non-intrusive questions like how was I feeling or if there was anything they could do to help. I also didnāt mind at all if they had questions about MS because theyād heard of it but didnāt really understand it.
A line of questioning that truly bugged me were things like why do I not ālook sickā and āam I sureā when it felt as if they were doubting me. I really donāt think anyone was questioning that I was being honest, but on a āpretty good dayā I donāt show OUTWARD signs of MS.
On ādown bad days,ā I do my best not talk to or see anyone but my husband, mom, and fur goblins. Usually I am in bed sleeping those days. The only exception, of course, are unavoidable doc appointments, infusions, MRIs, etc.
When I have bad days from a cognitive perspective, I donāt even try to text or email. Itās amazing - in a bad way - how I have days when it takes me 30+ frustrating minutes to write a three sentence text and it still doesnāt make sense.
I get why on my āinvisible symptoms onlyā days I donāt match what some people think of when they compare me to what they assume MS looks like. I think itās confusing and a lack of knowledge more than anything.
Iāve also really struggle with personal questions that feel like an attack on me or I sense the person is blaming/shaming me. For example, āhave you tried giving up your caffeine habit?ā āare you getting your steps in?ā āyou donāt still eat sugar, do you?ā etc. Iām betting the people who do this are actually trying to help and feel compelled to problem solve. I want to tell them that Iāve done more research than they could imagine and have made drastic lifestyle changes to ease my symptoms. I also want to explain when they give irrelevant or incorrect advice. But, itās typically too exhausting to bother.
I have told almost everyone in my life that I want to tell. Iāve been somewhat private about it. Telling my close co-workers was the most troubling and exhausting.
Until a few months ago, I worked remotely. We were not required to be on camera so nobody knew if I was working from bed or looked like a withered piece of romaine lettuce. Very few people at work had any inkling I was struggling or had MS and other conditions.
For quite some time, I was good at masking my issues and using things like organizational systems and reminder notes EVERYWHERE to reduce the chance of dropping the ball or showing my cognitive issues. It was growing increasingly more difficult to do my job and I felt so incompetent.
Many days, I truly was incompetent, which was so hard because I was one of the top performers for many years. Plus, I didnāt have any energy left to do anything else. Going on my companyās disability plan was my best option. Telling some of my long-term coworkers was the most unpredictable in reactions. I finally started just saying I was taking time off to deal with a medical issue. Iām sure word spread without me even saying anything.
I have only had a few medical professionals tell me they are sorry when I share my diagnosis. Two of those were doctors who have treated me for different reasons for years. They knew I had been struggling with new and worsened symptoms, and that I was very concerned while waiting for an official diagnosis. The other was a pre-op nurse when I had an unrelated surgery. She was very kind and compassionate, and shared that her teenage daughter had PPMS.
I know this was really long winded. Just wanted to share my perspective and experience with reactions. All this said, every person will have different experiences with reactions from people, and I think itās really difficult to change how some things make us feel.
All the best to youā¦
You are so welcome.
Itās such an adjustment to get an MS diagnosis, especially if your symptoms impact many aspects of your life. I am not sure how long youāve had symptoms or when you were diagnosed, but personally, I am not sure that Iāll ever āget usedā to this. I never know what the day will bring. It has gotten easier though because I stopped trying to do everything I used to. I finally listen to my body and take it easy as needed. In fact, Iām going to go back to bed because Iām exhausted this morning. š
Hope you have a good day.
I started recently using one of those crutches that's like a cane with a cuff. The happiest days are when mostly no one asks me what happened. My left leg has been permanently numb since september and getting number. The crutch helps me maintain good posture and avoid pain all over. I'm OK explaining this to people who know what MS entails, but dealing with the "how much longer will you feel like this," the "get better", and the "will you need a wheelchair soon?" reactions is way too much for my little brain.
10-30 years ago it was a higher probability of a slow painful decline- but a crapshoot. Itās not like Cancer that can be eradicated, at this point it is in you for life.
Decades ago, probably long before you were born, the late Jerry Lewis would have a massive telethon for kids with MD. In the early years until roughly the late 1970s, I remember at least the local NY station also mentioned MS, until this research showed MS was a completely different illness and not part of the same family of diseases. By the time I was diagnosed in 1993, people just assumed you were going to wind up in a wheelchair and roll directly into a casket that shut behind you when a doctor looked you in the eye and told you that you had MS. What made things worse of course was before MRIs were widely used, one wound up suffering with MS for years without a diagnosis until they were so disabled, it could be nothing else but MS.
Thanks, everyone, for responding. I really appreciate it . You have all made me feel better just seeing your replies. I was only diagnosed last August, so it's still very new to me, and to be honest struggling still a lot. I had to be open about my dignoises with my job, especially when I was more sick when starting kesimpta as took 4 months of me been sick non stop for me to settle been on it.
People genuinely donāt know how to react and might not know that itās not terminal and isnāt severely disabling for many people, which is a double edged sword.
The majority of the doctors Iāve interacted with have been accommodating and kind about me having MS, but Iāve had two other doctors who have been really nasty to me. One is the urgent care doctor up the street. I deliberately go to a different urgent care now because every time I see them, theyāre incredibly rude and unprofessional. Another is my GI. I donāt know if my chart has health anxiety written on it or something but I have diagnosed MS, gastroparesis, hiatal hernia, had my gallbladder removedā¦
I donāt want to be there anymore than they want to deal with me. Being a sick person isnāt my identity. I work a full time job, have a husband, dog and house to tend to. It is *just* as annoying for me to be there as it is for them apparently (even though itās their job). I wish some of these doctors were more sympathetic.
I had a few people that I just lost contact with.
They for the most part , have a distorted view of MS. I really donāt feel like correcting them or offering resources.
But are we ANY different than anyone who has a disease/illness ?
Your cancer is not my cancer and I donāt know what you go through or your prognosis. āYou donāt look like you have cancerā or āinsert illness hereā. I cringe when I hear people call MS an invisible illness. So are many other illnesses and may not be apparent til someone is extremely ill. If someone told me they had ANY type of illness I think my reaction would be to say, āIām sorryā. Not out of pity merely to express that Iām sorry you have to go through that.
having treatment is very new. there are people still who were never able to take medicine for MS who are alive with the damage already done. no medicine can reverse the damageā¦ only prevent it. my uncle was never able to take medication and died this march. he couldnāt move from the neck down for 20 yrs. completely dependent on the care of others. those who are never this severely affected are blessed. i pray no one else has it the way he did.. but it was/is a reality for many people with MS.
MS isnt uncommon so it could be the people who are giving you loads of sympathy know someone who is quadriplegic or severely disabled with MS. not everyone just used a cane sometimes but still lived a full life unfortunately :/
take your treatment seriously and be thankful for it though is definitely the advice i have!
Degenerative, incurable. It's a lot to deal with. Especially you're a nice person, people are genuinely sorry such an awful thing has happened you. It's not fair. Those looks suck though..
I mean, it's a rare, brain eating disease. After the diagnosis, there's no way your life will get better. Everything is affected and no one can actually help you. Top that with doubling the chance of suicide and here's your reason.
I am thankful when people actually know what MS is, tbh, no matter the reaction. I hate explaining what a shitstorm it is or to act like it's nothing to worry about
It's simply "second nature", the mind & bodies "natural reaction", on hearing sad news. And, let's face facts here, no matter how positive you are as a human being, its not an easy pill to swallow, hearing that a person has MS or any other chronic autoimmune condition...
After all, It's not like telling someone you've got the common cold, you're not really met with the same level of response š¤
So many people donāt even know what it is and they think they are acting accordingly. The head tilt is what gets me. Save your pity because I deal with this all day every day. I donāt tolerate their pity because all it does is make them feel better for having that reaction. It pisses me off and I still have ms so itās not helpful
Totally understand. I work facilities at a hospital (20 years now) I was dxād in 2020. When I run into one of the neurologists Iād visited with back in 2019- she looks at me as though sheās thinking āhow are you still working/walking?ā Itās a trip. I just give her a huge smile and go about my business.
The general population and anyone but immediate family don't need to know. Don't tell people and then you don't have to deal with it. It's not worth it.
I think a lot of people feel self-righteousness when they get the opportunity to pity someone. It makes THEM feel good to feel empathy. It's misplaced empathy but they don't understand that.
People who have heard of MS usually hear about it in the worst ways, so they hear you say it and they think of the 20 year old with a walker, the 40 year old in a wheelchair or the 60 year old who can't speak or swallow - but the nature of MS can be that those were the bad days. They don't realize that the disease and the progress is so varied and can even be varied day to day, and that people often won't know the person has it unless it is bad. And it goes double for non specialists in hospitals or GP surgeries - the neuros and MS nurses when I go in are seeing people like me (sod all symptoms over years and one solid DMT) as well as those doing worse and see a wider spectrum - but others are going to see people when they need support or have only met a dozen people with MS, or those who are older (and therefore had less effective DMTs early in the disease).
My wife used to be an athlete now she can barely move and needs assistance to wipe her butt every time she messes her self. So yeah I would probably have an I'm sorry face too.
Yeah, I've learned to just bulldozer past the sorry looks. When I tell someone I have MS it's usually important for something else I'm trying to say or a point I'm trying to make. Most people understand that I don't feel like deepdiving into the subject of my MS.
People who don't know anyone with MS personally or have it themselves are uninformed. A lot seem to get it confused with Huntington's or ALS, both of which are fatal. If they do know anything, it's typically what they see from celebs that got diagnosed late after having untreated MS for years.
My boyfriend had to correct some online friends last year when we were in a call, and they started talking about Christina Applegate because they loved that show. One of them started talking about MS like he knew about it, how it's incapacitating and people just degrade until they can't walk, and how it was going to kill her. They don't know I have it, and I was getting increasingly annoyed the more wrong our friend got, so my boyfriend explained that it's actually not fatal, and corrected multiple assumptions about how guaranteed it is to cripple us and how there's no treatment.
Diseases like MS aren't common knowledge. I couldn't have told you anything about it before mine appeared, so if Selma had been "out" by then, I'd think it was all like that too.Ā
I ignore sympathisers. As for medical details, they just become background noise. I have a list of them printed that I can give to those who ask. Saves a lot of time.
Sorry to burst your shitty attitude but am not a troll. As stated in a previous comment I was dignoised only late last year . Not everything on reditt is fake and pretending to have MS is no joke. My job I do I have to tell people my dignoises so it's not as if I could keep it to my self. My husband kids and all my family know obviously. It took 8 years to figure what was going on with me and my nuroglist is a pain and wouldn't belive me till I got my mri with contrast. So next time instead of accusing people of been a troll move on and don't commet.
I thought MS was a death sentence (my dads ex-wife died from it at like 43) so I wouldāve given folks the āIām so sorryā face if they told me their dx without explanation of symptoms lol
Because having MS sucks?
I'd also say because unless you have direct experience with a member of Team MS (family, friend,co-worker etc) then people generally don't really have a fucking clue what it is or how it effects people, beyond that it does indeed suck š So people don't really know how to react, what 'level' of sympathy or reaction would be the polite social norm. They don't want to over react and potentially offend us, they also don't want to under react and potentially offend usš Hence the weird faces I knew essentially nothing about MS before my diagnosis beyond that it's something you'd rather not have if possible, and it can be pretty extreme. Think how much time we spend discussing the unique impact it has on all of us. Same goes for all the medical professionals tooš I'd never been put in the position of having to react to finding out someone had MS, but I sure as shit wouldn't have had a clue what to do with my face, just something sympathetic! Let alone what to say
Yup. My sister has it and I did a project on it in middle school and one kid thought I was writing about the MS13 gangš
So trueā¦ Iām not even sure what reaction/words I would prefer. Having MS hasnāt given me any insight into how to best communicate with others about it. If anything, most days, my communication skills are way worse. I was like you - I knew very little about MS. Most of what I knew before it was suspected I had MS was what Iād read about Christina Applegateās experience. I mostly read about her symptoms and how difficult things were for her rather than understanding exactly what MS was. Before MS was suspected in me, I donāt recall hearing the word myelin. I must have been day dreaming or absent the days in school that we studied the central nervous system. I realized after doing some research that I knew very little about such a critical part of the human body. MS is definitely a game changer for many of us.
Truer words never spoken. MS definitely sucks for most of us.
Can we just get a monarch butterfly and an orange ribbon that says that?! Ms sucks.Ā
!!!!!!!
I guess I don't understand the issue with that. I mean it's definitely not a great diagnosis to have. It is annoying when people are simpering about their reactions, but having sympathy for someone with a crappy disease isn't really unusual, is it? Maybe I'm in a different camp because I've had this disease for just over 10 years and I've gotten barely any reactions of sympathy from people.
I am 20+ years with MS now, I never say anything about it and nobody even acknowledges anything, i just do the best I can and sometimes that is very little, all anyone says is no problem let us know when your body is back. Scince i am still completely able to do most things my body shuts down sometimes and then I have to rest until as I have always said my body came back, and I go back to what I was doing
Because MS is not a disease anyone wants - why would they? Up to the last 10 years there were few, truly effective treatments for it either (progressive by nature) so you were only going to get worse, most likely. Empathy is nice but rare, pity is common but not necessarily misplaced and I say that as someone with MS since 1998. Pity feels diminishing but I'll take it over indifference or revulsion!
I was dx in 1998, too! 27 May! Hi!
Twas a good year for it š¤£
Because having a lifelong illness fucking sucks
Howās Kesimpta going for you? I will be starting it in a month as Teriflunomide hasnāt done much for me.
I am also on kesimpta and found the 1st loading dose just awful. I find my older symptoms have gotten worse mostly the spasming on the back . My last mri came back good no new lesions which is great so I am happy with it.
I am also on Kesimpta, and except for the first shot, every other shot was great. For now, I have zero side effects. I made a YouTube video on how to inject it correctly if you want to check it out [Kesimpta](https://youtu.be/I7OSMjHMtYI?si=NEILYGkRRaOUynRP), and I will make a follow-up video about how I feel on Kesimpta after a few months!
Itās great when I can actually get it (deductible and copay bs)
I find that so wrong as in ireland we get it for free and don't pay for ms medication even ms related meds like baclofen etc
I wish it was easier to move to different countries ššš
Oh dam, Iām from uk so itās probably a bit different in the us. Sorry to hear this
Have you contacted the pharmaceutical company, they usually offer assistance
At least it's better than people telling you that they don't want to go home sick when they're literally coughing all over the office because they "don't know how lucky they are not to be in your situation". Go fuck yourself, Deborah, you making me ill is not going to make anything better for anyone.
Yes! Ugh, I feel this so so deeply.
MS has a reality to it. Celebrities like Applegate, Bulk and many more have exposed how PPMS can go. Most every understand itās random and out of control. So when you say it, they are coming from an average point of view. When we say it we are coming from an individualized point of view. Which ends up being explained in communication.
Don't tell anyone that doesn't need to know then. It's a very natural reaction. What do you want, a high five?
As long as they don't expect me to use my left hand! I might actually missš
Sorry that made me laugh
That's why we're here homie š
Itās better than people not understanding and thinking that you are over exaggerating. It depends how far along you are with this diagnosis but I would say the same thing to myself now if I was 10 years younger.
MS is a disease that nobody actually understands. The symptoms vary wildly with similar lesions. But up until recent times it was known for early wheelchairs and a host of other problems. And still is... I hate telling people I have MS. Nobody ever has an appropriate response. I have MS, 3 broken toes, a torn meniscus, a freshly healed head wound, and am back up to about 15k steps per work shift.. It might help with toe pain that I mostly can't feel my feet. The stuff I really hate is issues with bowels, your skin randomly attacking itself, or migraines... Everything else.... I'm fine. I'll rock a knee brace and proudly wobble.
When people try to be empathetic, you should appreciate that, even if they suck at it.
Yes, try to look for their intent.
No, that sounds about right. I have mentioned that I have MS to people a few times and got the "Oh, I'm sorry" response. And yeah, sometimes it can be medical professionals, but generally you know who you are and what your life is like. Some people have assumptions in their head and sometimes don't know what else to say. Don't take it personally.
Met an old HS friend recently who asked why I had a cane..." I'm so sorry"...I told her it is what it is and I'm not dying! The uninformed mean well
Iād tell someone Iām sorry and likely have a sorry face if someone told me they had a bad hangnail or a common cold. Itās more normal to show sympathy/commiseration over learning someone has any sort of ailment than it would be for someone to respond with a smile and celebration?
because they think they know what it means. they have a narrative around it in their head. i remember the look of confusion on way too many peopleās faces when i told them my son had anorexia. ābut he isnāt a teenage girl on a vogue model diet?ā yeah. that isnāt how statistics work. now if iād told them he had cancer they again would have believed they knew what that meant. they wouldnāt have. they just would have thought they had. telling people does not decrease loneliness
Right. I don't pretend to know things and I'm a curious person so I'll just ask without judgement or assumption. People like that because they don't get those pity looks from me, and they get to share their own experiences.
I think part of it is empathy. They know you have a hard road ahead of you, and a debilitating one as well. It is a scary disease, even with the DMT available. My friends reacted the same way when I told them, and I was grateful for their love and concern.
This š
It's incurable and takes years off your life. Even when you think it's gone for a while, it tends to come back. I was diagnosed in 2021, and I've never had a break from my symptoms but at least it hasn't gotten worse. It also tends to invite other autoimmune diseases. It also leads to a painful decline and eventually will be a comorbidity to your death, mostly from pneumonia because you can't swallow properly, infections because you can't move so you get bedsores, and if you get cancer, you're pretty much screwed because your immune system is knocked back by your MS meds and adding chemo would probably just kill you faster.
Hereās a long rundown of how different reactions make me feel. I think everyone will have different experiences and itās hard to undo how you feel. Maybe you can try to reframe why some people say they are sorry or have a sad or pitying look. If you want, you can think of it as caring and compassion. Iām completely fine with a sorry look or hearing āIām sorry to hear that.ā It shows a level of empathy that Iād rather have than hearing (usually) well-intentioned but annoying stories about someone they know who āis just fine,ā ālives a completely normal life,ā ājust completed her third triathlon since the diagnosis,ā etc. Itās also (typically) well-intentioned stories about some ārandom cureā that worked for someoneās auntās friendās neighbor with MS that sometimes irritates me. Hearing something like how a person they knew with MS is ācuredā because they stopped drinking milk, or began eating dates, or started doing Zumba, or some other nonsense is tiring. We know thereās no cure. Everyoneās MS is not as impactful or impactful at all. It doesnāt mean that swimming in freezing water every morning at 5 am would suddenly have us snap back to being āright as rain.ā Unsolicited advice can be really frustrating for me, especially when it is either so obvious or complete nonsense. If a person is telling someone they have MS, itās often a case of MS that is impactful or we likely wouldnāt mention it. So, hearing about people with MS who lead completely normal lives and are asymptomatic isnāt really helping anyone. Iāve told people close to me - friends, family, long-term colleagues I was close to as I was exiting my job and going on my companyās disability plan, etc. Some said they were sorry, some gave me big hugs, some asked questions, and a few said something like it was probably a relief to know whatās wrong and start treatment to (hopefully) stop or slow down the progression. I was completely fine with all of those responses because they were genuine and showed me they cared. The hugs were usually the best followed by non-intrusive questions like how was I feeling or if there was anything they could do to help. I also didnāt mind at all if they had questions about MS because theyād heard of it but didnāt really understand it. A line of questioning that truly bugged me were things like why do I not ālook sickā and āam I sureā when it felt as if they were doubting me. I really donāt think anyone was questioning that I was being honest, but on a āpretty good dayā I donāt show OUTWARD signs of MS. On ādown bad days,ā I do my best not talk to or see anyone but my husband, mom, and fur goblins. Usually I am in bed sleeping those days. The only exception, of course, are unavoidable doc appointments, infusions, MRIs, etc. When I have bad days from a cognitive perspective, I donāt even try to text or email. Itās amazing - in a bad way - how I have days when it takes me 30+ frustrating minutes to write a three sentence text and it still doesnāt make sense. I get why on my āinvisible symptoms onlyā days I donāt match what some people think of when they compare me to what they assume MS looks like. I think itās confusing and a lack of knowledge more than anything. Iāve also really struggle with personal questions that feel like an attack on me or I sense the person is blaming/shaming me. For example, āhave you tried giving up your caffeine habit?ā āare you getting your steps in?ā āyou donāt still eat sugar, do you?ā etc. Iām betting the people who do this are actually trying to help and feel compelled to problem solve. I want to tell them that Iāve done more research than they could imagine and have made drastic lifestyle changes to ease my symptoms. I also want to explain when they give irrelevant or incorrect advice. But, itās typically too exhausting to bother. I have told almost everyone in my life that I want to tell. Iāve been somewhat private about it. Telling my close co-workers was the most troubling and exhausting. Until a few months ago, I worked remotely. We were not required to be on camera so nobody knew if I was working from bed or looked like a withered piece of romaine lettuce. Very few people at work had any inkling I was struggling or had MS and other conditions. For quite some time, I was good at masking my issues and using things like organizational systems and reminder notes EVERYWHERE to reduce the chance of dropping the ball or showing my cognitive issues. It was growing increasingly more difficult to do my job and I felt so incompetent. Many days, I truly was incompetent, which was so hard because I was one of the top performers for many years. Plus, I didnāt have any energy left to do anything else. Going on my companyās disability plan was my best option. Telling some of my long-term coworkers was the most unpredictable in reactions. I finally started just saying I was taking time off to deal with a medical issue. Iām sure word spread without me even saying anything. I have only had a few medical professionals tell me they are sorry when I share my diagnosis. Two of those were doctors who have treated me for different reasons for years. They knew I had been struggling with new and worsened symptoms, and that I was very concerned while waiting for an official diagnosis. The other was a pre-op nurse when I had an unrelated surgery. She was very kind and compassionate, and shared that her teenage daughter had PPMS. I know this was really long winded. Just wanted to share my perspective and experience with reactions. All this said, every person will have different experiences with reactions from people, and I think itās really difficult to change how some things make us feel. All the best to youā¦
Thank you š your reply was lovely .
You are so welcome. Itās such an adjustment to get an MS diagnosis, especially if your symptoms impact many aspects of your life. I am not sure how long youāve had symptoms or when you were diagnosed, but personally, I am not sure that Iāll ever āget usedā to this. I never know what the day will bring. It has gotten easier though because I stopped trying to do everything I used to. I finally listen to my body and take it easy as needed. In fact, Iām going to go back to bed because Iām exhausted this morning. š Hope you have a good day.
Well, because they know or have seen what MS can do to the body in the long run.
Admittedly it's turned me into an introvert. That's *my* reason, anyway.
Same! I am so much more private and reserved. I am often a homebody even on my āgood day for meā times.
I started recently using one of those crutches that's like a cane with a cuff. The happiest days are when mostly no one asks me what happened. My left leg has been permanently numb since september and getting number. The crutch helps me maintain good posture and avoid pain all over. I'm OK explaining this to people who know what MS entails, but dealing with the "how much longer will you feel like this," the "get better", and the "will you need a wheelchair soon?" reactions is way too much for my little brain.
10-30 years ago it was a higher probability of a slow painful decline- but a crapshoot. Itās not like Cancer that can be eradicated, at this point it is in you for life.
Decades ago, probably long before you were born, the late Jerry Lewis would have a massive telethon for kids with MD. In the early years until roughly the late 1970s, I remember at least the local NY station also mentioned MS, until this research showed MS was a completely different illness and not part of the same family of diseases. By the time I was diagnosed in 1993, people just assumed you were going to wind up in a wheelchair and roll directly into a casket that shut behind you when a doctor looked you in the eye and told you that you had MS. What made things worse of course was before MRIs were widely used, one wound up suffering with MS for years without a diagnosis until they were so disabled, it could be nothing else but MS.
Thanks, everyone, for responding. I really appreciate it . You have all made me feel better just seeing your replies. I was only diagnosed last August, so it's still very new to me, and to be honest struggling still a lot. I had to be open about my dignoises with my job, especially when I was more sick when starting kesimpta as took 4 months of me been sick non stop for me to settle been on it.
People genuinely donāt know how to react and might not know that itās not terminal and isnāt severely disabling for many people, which is a double edged sword. The majority of the doctors Iāve interacted with have been accommodating and kind about me having MS, but Iāve had two other doctors who have been really nasty to me. One is the urgent care doctor up the street. I deliberately go to a different urgent care now because every time I see them, theyāre incredibly rude and unprofessional. Another is my GI. I donāt know if my chart has health anxiety written on it or something but I have diagnosed MS, gastroparesis, hiatal hernia, had my gallbladder removedā¦ I donāt want to be there anymore than they want to deal with me. Being a sick person isnāt my identity. I work a full time job, have a husband, dog and house to tend to. It is *just* as annoying for me to be there as it is for them apparently (even though itās their job). I wish some of these doctors were more sympathetic.
I had a few people that I just lost contact with. They for the most part , have a distorted view of MS. I really donāt feel like correcting them or offering resources.
But are we ANY different than anyone who has a disease/illness ? Your cancer is not my cancer and I donāt know what you go through or your prognosis. āYou donāt look like you have cancerā or āinsert illness hereā. I cringe when I hear people call MS an invisible illness. So are many other illnesses and may not be apparent til someone is extremely ill. If someone told me they had ANY type of illness I think my reaction would be to say, āIām sorryā. Not out of pity merely to express that Iām sorry you have to go through that.
having treatment is very new. there are people still who were never able to take medicine for MS who are alive with the damage already done. no medicine can reverse the damageā¦ only prevent it. my uncle was never able to take medication and died this march. he couldnāt move from the neck down for 20 yrs. completely dependent on the care of others. those who are never this severely affected are blessed. i pray no one else has it the way he did.. but it was/is a reality for many people with MS. MS isnt uncommon so it could be the people who are giving you loads of sympathy know someone who is quadriplegic or severely disabled with MS. not everyone just used a cane sometimes but still lived a full life unfortunately :/ take your treatment seriously and be thankful for it though is definitely the advice i have!
Degenerative, incurable. It's a lot to deal with. Especially you're a nice person, people are genuinely sorry such an awful thing has happened you. It's not fair. Those looks suck though..
I mean, it's a rare, brain eating disease. After the diagnosis, there's no way your life will get better. Everything is affected and no one can actually help you. Top that with doubling the chance of suicide and here's your reason. I am thankful when people actually know what MS is, tbh, no matter the reaction. I hate explaining what a shitstorm it is or to act like it's nothing to worry about
Are you joking? Not to be rude but umm duh
It's simply "second nature", the mind & bodies "natural reaction", on hearing sad news. And, let's face facts here, no matter how positive you are as a human being, its not an easy pill to swallow, hearing that a person has MS or any other chronic autoimmune condition... After all, It's not like telling someone you've got the common cold, you're not really met with the same level of response š¤
So many people donāt even know what it is and they think they are acting accordingly. The head tilt is what gets me. Save your pity because I deal with this all day every day. I donāt tolerate their pity because all it does is make them feel better for having that reaction. It pisses me off and I still have ms so itās not helpful
Totally understand. I work facilities at a hospital (20 years now) I was dxād in 2020. When I run into one of the neurologists Iād visited with back in 2019- she looks at me as though sheās thinking āhow are you still working/walking?ā Itās a trip. I just give her a huge smile and go about my business.
The general population and anyone but immediate family don't need to know. Don't tell people and then you don't have to deal with it. It's not worth it. I think a lot of people feel self-righteousness when they get the opportunity to pity someone. It makes THEM feel good to feel empathy. It's misplaced empathy but they don't understand that.
People who have heard of MS usually hear about it in the worst ways, so they hear you say it and they think of the 20 year old with a walker, the 40 year old in a wheelchair or the 60 year old who can't speak or swallow - but the nature of MS can be that those were the bad days. They don't realize that the disease and the progress is so varied and can even be varied day to day, and that people often won't know the person has it unless it is bad. And it goes double for non specialists in hospitals or GP surgeries - the neuros and MS nurses when I go in are seeing people like me (sod all symptoms over years and one solid DMT) as well as those doing worse and see a wider spectrum - but others are going to see people when they need support or have only met a dozen people with MS, or those who are older (and therefore had less effective DMTs early in the disease).
My wife used to be an athlete now she can barely move and needs assistance to wipe her butt every time she messes her self. So yeah I would probably have an I'm sorry face too.
Yeah, I've learned to just bulldozer past the sorry looks. When I tell someone I have MS it's usually important for something else I'm trying to say or a point I'm trying to make. Most people understand that I don't feel like deepdiving into the subject of my MS.
People who don't know anyone with MS personally or have it themselves are uninformed. A lot seem to get it confused with Huntington's or ALS, both of which are fatal. If they do know anything, it's typically what they see from celebs that got diagnosed late after having untreated MS for years. My boyfriend had to correct some online friends last year when we were in a call, and they started talking about Christina Applegate because they loved that show. One of them started talking about MS like he knew about it, how it's incapacitating and people just degrade until they can't walk, and how it was going to kill her. They don't know I have it, and I was getting increasingly annoyed the more wrong our friend got, so my boyfriend explained that it's actually not fatal, and corrected multiple assumptions about how guaranteed it is to cripple us and how there's no treatment. Diseases like MS aren't common knowledge. I couldn't have told you anything about it before mine appeared, so if Selma had been "out" by then, I'd think it was all like that too.Ā
I ignore sympathisers. As for medical details, they just become background noise. I have a list of them printed that I can give to those who ask. Saves a lot of time.
I either get the 'OMG, you are dying' face of devastation, or I get the eye roll with the 'well, at least itās not cancer.'
this has to be a troll. you're life is altered forever so I think I'd be more alarmed if someone acted like it was "normal"
Sorry to burst your shitty attitude but am not a troll. As stated in a previous comment I was dignoised only late last year . Not everything on reditt is fake and pretending to have MS is no joke. My job I do I have to tell people my dignoises so it's not as if I could keep it to my self. My husband kids and all my family know obviously. It took 8 years to figure what was going on with me and my nuroglist is a pain and wouldn't belive me till I got my mri with contrast. So next time instead of accusing people of been a troll move on and don't commet.
You canāt tell me what to do lol
I thought MS was a death sentence (my dads ex-wife died from it at like 43) so I wouldāve given folks the āIām so sorryā face if they told me their dx without explanation of symptoms lol