I have MS, but it doesn’t define me or usurp my identity
The disease is part of who I am, but I still maintain the essence of me
I spent the majority of my life wearing an Army uniform. As a result, I never had to worry about what I’d wear to work all those years. Come to think of it, I never had to worry about that during my civilian years, either.
I’m the middle child between two sisters, so I didn’t have to pick out my own clothes for the first 18 years of my life. I’m not implying that my sisters dressed me, rather that if I left the house and no one was laughing, I knew I’d made adequate fashion choices.
Between then and getting married, there were kind women who didn’t so much date me as foster me until I was ready for my forever home. Part of that, apparently, was dressing me in presentable clothes. This year I’ll have been married 15 years, and I don’t think I’ve picked out or bought clothes for myself in all that time. If my wife didn’t take such good care of me, I think I’d be grateful for a uniform again.
Wearing it on your sleeve
In the military, a uniform serves several purposes. When you join, your hair is shaved and you replace your individual clothes with a uniform in a deliberate and necessary effort to strip you of your individual identity. As you progress, your entire story can be read on your uniform. You literally wear your identity on your sleeve, and when you take the uniform off, that identity disappears. If you don’t have a strong one to replace it with, it’s easy to want to cling to that one, or simply feel lost.
Like basic training, multiple sclerosis (MS) seeks to strip its recruits of their individual identities. Unlike the Army, however, I didn’t volunteer for MS. And if people with MS are a cohesive unit, it’s in spite of this disease, not because of it. To top it off, MS doesn’t provide a uniform or an identity that I can be proud of.
There’s no denying the realism of my life with MS, but I’m loath to identify as a sick person. Early in my MS journey, I desperately tried to cling to my identity before the disease. When I discovered that I couldn’t keep it entirely, I felt bitter and lost.
What is my identity now? I have multiple sclerosis. That much is undeniable — to me, at least, but not to everyone else, because I don’t wear it on my sleeve. Even if I wanted, I’m not sure how that would be possible. Like everyone with MS, my diagnosis isn’t obvious, even if some of my symptoms are. A T-shirt or uniform might satisfy the passing curiosity of strangers, but it wouldn’t begin to tell the whole story of my identity, much less my MS journey.
I think I might owe the “I have MS, but MS doesn’t have me” crowd an apology. I don’t like that phrase because every time someone has to do something as small as hold a door for me, I’m reminded that MS does indeed have me. When it comes to identity and personality, however, MS doesn’t completely have me. I’m still very much me. The Army — like MS — might have temporarily altered my identity, but my core hasn’t changed.
With all that said, I hope you aren’t under the impression that I have all the answers about how to continue being yourself when you have a disease that tries to take your identity from you. I don’t know where to draw the line between acknowledging this disease and not letting it dominate our identity. Maybe that line is as individual as MS itself and thus different for everyone. Maybe there isn’t supposed to be a line at all, and our identities before and after MS are supposed to blend seamlessly.
But I don’t think that blending is the case. I don’t think those two identities are supposed to merge because, in my mind, it implies that I think of them as equal. I don’t think I’m supposed to identify as someone who has MS with just a small part of my old identity. Instead, I think I’m supposed to just be me, with a side of multiple sclerosis.
Identity with a chronic disease is a deep subject. I intend to return to it more down the road. In the meantime, I’d love to hear your thoughts on the topic in the comments below.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Lucinda Martinez
I enjoyed reading your post. The clothing thing made me smile :) I too oscillate between being Lucinda and being Lucinda with MS. Its an interesting thing to debate with oneself because as you say, we are who we are, but who we are with MS is different. Or is it? As soon as I write this the being Lucinda part of me seems the more defined of the two "me's". Having been diagnosed with PPMS about 3 years ago has definitely had a major impact on me, or who I feel I am, but its not the final word. Thanks Ben. Take care. Lucinda
Benjamin Hofmeister
Thanks for the comment Lucinda. Now I'm going to have to come back to the concept of identity at least two more times in the future. One subject I want to cover is our changing and adapting concept of identity. I also intend to delve into the fact that everyone we meet knows a different version of us. Does that mean we can know different versions of ourself? I'm not sure, not sure at all. I've got to do some more digging and self searching before I write that one.
M Howard
In my 6th decade on this planet, I have SPMS, so I’m told. My identity is something I struggle to keep intact. And as you so eloquently said, for some people, MS does very much have its grip on one’s everyday world. Try as hard as I can, I’m still stuck in a power chair and everything that I do takes a ton more effort (read energy). I do live independently, and though not much support out here on the East Coast of Canada, I am reminded daily (rather bluntly) of this disease.
I hope for every MS sufferer, the best life and to keep trying as best as one can, to retain your person and all of its wonder.
Benjamin Hofmeister
Thank you for reading and for the comment. I think your last sentence sums it up beautifully. Live your best life and keep trying as best one can to retain your person and all of its wonders. Well put thank you so much.
Ian
I’d argue the opposite. 20 years in and MS dictates what I do, how others view me and how I view myself. I’m the guy that needs the wheelchair assistance at the airport, the downstairs room at the resort hotel, the guy who watches from the sidelines. An observer not a participant. When I’m invited to a party I worry about the number of steps at the entrance, or if there will be a spare chair. On a train I worry about the gap between the train and the platform, or the distance to the taxI rank. I watch the gardener mow the lawn (my old job) and take the car to the car wash (washing the car by hand was my Sunday morning job).
The first ten years were manageable (worked for 13 years after diagnosis). The next ten have been looking back each year to see what I’ve lost / can no longer do. I’d argue that MS is life altering and at times all consuming - the knee brace attached in the morning and taken off last thing at night, the thyroxine table taken every morning (a side effect of a highly effective DMT). In realty this is 5% of the life I had.
I hope we can agree to disagree on this issue. I see no positives in having MS - it’s like chalk and cheese compared with my old life.
Patricia
My daughter has MS. She’s a cancer surgeon and she achieved this while she had MS. When the private equity corporation tried to cheat her out of money they owed her, she sued them, WON, left, and built her own clinic - with you in mind, btw. Your life is hard, I know it. But because of people like her, you get to complain. Please keep going. It’s hard, but please don’t let MS define you.
Ballerina
I completely agree, My identity before ms Was helping other people. A care giver, and now I’m an albatross around my husbands neck, all thought he would never admit it ,I can see what the years of making sure that I was (ok ) and having to stay at jobs that were way below him due to the need for health ins. You see when I tried to get disability benefits I was not able to get them because they didn’t think I was sick enough , when they said I qualify it was to late my time had run out. So we r a one income family, my husband is aging rapidly due to worries about me ,and the economy. Yes ms definitely, defines not only my life , but that of my family’s as well
Julia huiskens
Hey Ian,
I wanted to type a reply to Benjamins piece, but then i red yours. And replying to him became irrelevant and unnecessary. To-tal-ly agree with you. Unless you re-invent yourself (God knows how) your identity is gone, forgood. Èverything i learned, studied for, build up, created is *poof* gone. Well, not poof, in an instant, but you know what i mean. In fact, for me, that's one of the biggest problems; especially in the beginning, i whished the big one, so to say, just *poof* came and then that would be it. Huge relapse, nice wheelchair or whatever. Not steal something bit by bit. And not only slowly loosing all the things that made me "me", but aĺ kinds of body functions as well. Im not a marathon enthousiast, but still, kind of fond of walking. When you break a leg, it doesn't happen gradually. Bang, fell of my bike, pain, ER, x-ray, cast. Ok, just occured to me how this isn't the best of comparisons.. The broken leg eventually will heal. Maybye a chronic illness, that gets you overnight. But leaves it there. You have to be very carefull with these kinds .of analogies. A friend of mine thought i made his cancer seemed like a good deal... I just ment that i, speaking for myself, could start with the whole acceptance thing and rearranging my life. Now, i can't properly draw and paint anymore. Identity-wise, i started drawing since, jeez, the cradle? Art-school was not even a question. Ofcourse i went. Became an art-teacher. Loved playing djembe, guitar and, don't laugh, my recorder. Won't continue my list. Could sound sentimental & whiny. And makes me sad &angry. Always. Still. But good for them, if they can find another "self". I can't see me doing something else. I'm horrible at math, thinking commercially, am a technical disaster.. So for me, i don't believe that this Renaissance-womam is in there.
Patricia Galbraith
I admire you ,although you think MS owns you it's obvious you don't sit on the couch all day ,you get out and about airporfs , train ,, sideline viewing and you even go partying .
You own the MS
I consider my self luck as i was well into my 60s when diagnosed ,so I won't have to own this MS for long .
Trish Nafotz
I feel as you do, Ian. It has changed my life irrevocably.
Benjamin Hofmeister
Thanks Trish! Did you see the comment from Tom above? I think he put it just right, multiple sclerosis as completely changed they're trajectory of my life.
Benjamin Hofmeister
Thank you for leaving the comment Ian!
We absolutely can't agree to disagree. In my early years I tried not to let multiple sclerosis have any part of my identity. If I look back at pictures taken during that time there are people holding me up on my cane and eventually my Walker are out of frame. I absolutely acknowledge that I have MS. With only one truly working limb and that only at about 50% there is no doubt that I have this disease. I just refused to let it take over my identity, the way that I think about myself and wish to be seen by others. Multiple sclerosis is definitely part of my identity. There is no escaping that. However, like I said in a previous comment, rather than be an MS patient who happens to be named Ben, I am Ben, the same one I've always been, who just happens to have MS.
Catherine Salucci
Hello Benjamin. I was diagnosed in May 1977. The biggest concern I had was could I still move to Germany. I had traveled EU when I was 19/and 20 and fell in love with the countries expecially Italy as I was the first to return after my grandfather had left there in 1916. I have made my motto my entire life, “I don’t have time to be sick.” I was dx at a time when there weren’t any meds other than Prednisone and a Spinal Tap determined if you had MS. I have been really blessed with my RRMS. I occasionally use a cane but that is seldom. I will be 71 in 10 days. I medically retired at 60. I still am prescribed Prednisone if I have a relapse. I only took Avonex when it first came out on and off for 5 years because I didn’t like shots. Aubagio didn’t agree with me, so that lasted only 3 months. I am not taking any DMD. Yes I have symptoms of MS. I know my limits and go with the flow. Each one of us is different, even though we may have the same symptoms. My main goal is to keep on traveling and live to 90 God willing. I want to thank you for your service in the Army. I worked for the military 37 years. Feel free to contact me with any questions and hopefully I can answer.
Ian
Catherine,
1977 - that must be near a record. My neuro told me that the average life expectancy after diagnosis was c.30 years. My aunt died of MS in her early 50s (back in the 1990s). That’s a key issue with this disease - there’s no real way of giving you a fairly accurate diagnosis. I saw this story on the MS Trust website and it broke my heart.
https://mstrust.org.uk/news/stories/advanced-ms-23-years-old-my-story
I wish you well and fingers crossed you make it to 90+.
Benjamin Hofmeister
Thank you so much for the comment Being a reader And for your kind offer Catherine
Jennifer Montgomery
I honestly don’t know how I think of myself vis a vis MS. I’m very fortunate to have a “mild” version (so far) of the disease. But I do know that can change at any time with no advance notice. I have cognitive issues and some nerve damage since my first attack in my mid to late 30’s. Now at 63, I wear a runners sleeve so my forearm and hand don’t get too much sensory input. MS definitely doesn’t have me, but I definitely have MS.
Benjamin Hofmeister
Thanks for the comment Jennifer!
I intend to visit this topic again in the future, because I don't really know how I see myself either. I know that multiple sclerosis is a part of my identity but I would like to keep it as just a small part. Right now I try to see myself as Ben, who happens to have multiple sclerosis. I also want to explore how other people see me. I know that every person I come in contact with as a different identity for me. I wonder what that is?
Ev Drozen
I've had MS for 17 years. It's both a blessing and a curse. 16 years ago my first grandchild was born. He is my blessing. He plays baseball on the town league, and high school varsity team. He plays on a travel team also. I used to go to all the games, but as my MS has progressed, I can no longer do that- a curse. I too have PPMS.
He has 2 younger sisters who play softball. I miss most of their games. Life's a b...ch.
Benjamin Hofmeister
That's one of the great paradoxes of multiple sclerosis. I am so glad that I'm spending every day at home with my children, but I wish I could play with them more and neither they nor I am happy for the reason that I get to stay home.
Great comment!
Patricia Denman
I have Celiac disease, my brother has MS. Our closest relatives were never diagnosed with either of these conditions but exhibited symptoms and some died at an early age. We need better and more widespread testing. I advocate for all those neglected suffering citizens left in the dark!
Benjamin Hofmeister
Yes! We definitely need better testing and earlier testing. I have no family history of the disease and had very little knowledge of it until I was diagnosed with it myself. I think this might be why it was the last thing my doctors or I ever thought of.
PatricIa P. Garrett
I stand up to MS! It surprises me that so many health professionals do not are not more aware of the research that is taking place in MS. I led a support group for awail and this leadership meant that I had to be on top of the research. We had speakers and toured a horse facility for persons suffering from brain injuries. We did not have. a pity party. We are all "Standing Up to MS" I am proud that you have given us this forum to express ourselves.
Benjamin Hofmeister
You are so welcome Patricia!
I'm very fortunate in that the neurologist I see is a multiple sclerosis specialist and neuro-immunology expert involved in teaching and research. I saw him at the cmsc conference this year where he was going to try and catch up on all the research going on. Even a professor of Neurology isn't able to keep up with everything on his own. I'm glad to know that he's trying to stay the rest of the research that's going on outside of his little bubble, because not everyone does.
Tom Unrath
I was a USAF chaplain for 22 years. I was diagnosed with MS at age 48 after a couple years of testing. I then had to be evaluated by a Medical Review Board to determine my eligibility to remain on active duty. The board's report came back saying I could stay but could not serve outside the continental US. To me that meant I would not be able to do the job as I should, so when my current position as a Staff Chaplain and instructor was over, I retired. MS took the final years of that career from me. I transioned to serving civilian congregations until my MS symptoms rendered that untenable. Trigeminal neuralgia made it so there were times I couldn't even speak through the pain. Not a good thing for a preacher. Another career given up to MS. While MS does not define me or own me, it certainly has redefined my trajectory through life. My uniforms changed a couple times, but now I have better stories to use as an MS advocate!
Benjamin Hofmeister
Hi Tom, and thanks for your service! I really like what you said about redefining your trajectory in life. I suppose that's the way I think of it too. It isn't my whole identity just a part of it, but has altered the path that I'm taking.
I'd make a snide USAF comment, but since I have more family in the Air Force than I do in the army, someone will overhear. Probably someone who's not afraid to smack a disabled guy.
leslie
I'm a newbie here, but a 30 yr vet with ms. I gotta agree with Ian. The last 3 yrs has brought me 2 bloody noses and 1 concussion from tripping while walking- not running- on my treadmill. The foot doc told me my right foot's a mess due to ms. Not the neurologist I've been with for 12 years, a foot guy. When first diagnosed, I read, and read, bla bla... I tell people just diagnosed, knowledge is power, but too much of ms knowledge can put you in a dark place. It's a f'd up disease, do what makes you happy, the disease isn't going anywhere. I'm looking into fes devices now. Drug my foot so badly this morning walking my dog, with a walker that's got 12" all terrain tires, like the jeep I had with 6" lift kit I sold cuz of ms. Only positive this morning was my patient, loyal pit bull. waiting for my disabled butt to get up
Benjamin Hofmeister
Hi Leslie! I was actually a Land Cruiser guy, but parts were hard to come by and I envied the Jeep people who could find parts on just about every corner. I had to let go of my fj60 because of MS just like you, but I cannot bring myself to let go of my 64 fj40, even though I will never drive it again.
On the foot drop issue, when I could still walk, I had good luck with afos and with electrostimulating devices like walk Aid or the bioness system. The only problem I ever ran into was when a clerk at the grocery store saw the leg cuff and assumed I was under house arrest.
Ellen Lerner
Hello everyone, I read the first story and I wasn’t going to respond, but then I read all the comments and I got motivated. I don’t know that I ever understood the comment “MS does not have me” Maybe because I have had a Mild type of MS. I was diagnosed at 57 ( 18 years ago ) and that was three years after my youngest daughter was diagnosed at age 20. Never ever occurred to me especially since nobody in any part of my family has ever said they had MS I would or a child of mine would have MS someday.Both myself and my daughter have a very mild case of MS. We were both on different DMT Meds 12 yrs. Her doctor where she lives said she was doing so well and her MRIs were so good that she didn’t need to be on her DMT anymore with sparked my interest in wanting to quit my medication, I did three years later with my neurologist blessing. I have been off five years so far. I have some problems like the OAB, are you increasing which could’ or could not be due to MS but nobody knows for sure. Could be due to having five children or could be due to heredity as my mother had some issues with bladder or my age. it’s hard to say. But anyway, I haven’t given a lot thought since I’ve been doing OK until today………when .
I saw my ophthalmologist. I have not been seeing as well as I would like even after cataract surgery last December/January., I did have a previous ophthalmologist who unfortunately passed away, and her testing showed me yrs. ago that my optic nerve was about 15% not functioning normally because of my MS. She kept tabs on it, but it didn’t change. However, last year my new ophthalmologist said he thought I might have a form of glaucoma that doesn’t show up in the usual testing. He also felt I needed cataract surgery since I was having trouble reading a close which he thought could also be some form of glaucoma and/or something to do with my MS. So he put me on these different drops for what he saw was very extreme dry Eyes and when I went to see him today, he said that my eyes were much improve; before;they were quite scratched d/t extreme dryness and didn’t think I had glaucoma,, but he felt that my MS nerve was creating a difficulty with my ability to see close. Cataract surgery changed me from being nearsighted to farsighted which didn’t help as far as reading is concerned. I used to be nearsighted but became farsighted after the surgery but still needed glasses which were not doing the job well enough.. I would like to see small print. He gave me two options either one which I could do.. One choice would be another surgery to put in a different kind of I could choose
the non-invasive for the moment which means redoing my glasses so they would be more magnification and allow me to see and read better, which has been difficult the last few months and trying to get things done when it meant I had to pay bills etc. I decided on the ladder and I have Prescription for a new glasses.
If I am unhappy with the results, I can have a redo of my surgery to hopefully make my vision even closer.
so now my question after reading these articles here has been does my MS finally have me? I still walk on my own, and other than than The above Issues, I haven’t thought all that much about my MS. I’m still ME but a ln older person that has a MS and a few issues, including A-Fib, OAB and a couple other issues and now I have vision problems Most likely due to MF. All honesty I think now that I have this new issue, which is probably MS caused I may be thinking more about my MS. This part of who I am. Time will tell!
Benjamin Hofmeister
Thanks for the comment Ellen! I never liked the MS doesn't have me statement either. The only time that I am unaware of MS in my life is when I'm dreaming. So, I would say that it definitely has me, it just doesn't have all of my identity. Mostly because I refuse to let it. There's no doubt that it is part of my identity especially Through The Eyes of other people, it's just not the main part of my identity.
I'm not a patient with MS named Ben, I'm Ben, the same Ben I always was, who happens to have multiple sclerosis.
Carol Allen
Hello Benjamin, I found your story very interesting regarding your army uniform. I’ll tell you a story that happened to me yesterday and some background. I was diagnosed with PPMS almost 20 years ago. I was a very committed social worker who worked in London with mentally mothers and their dependent children. My clients showed me wonderful kindness and respect. I’m proud to say although it was tough I reached my state retirement age (62) a decade ago. I feel my work keep me focused, as my husband of 35 years said he wanted a divorce! I’m incredibly blessed with three amazing children. I also have lifelong friends.
I now have advanced MS and have carers three times per day.
Yesterday a new carer from Africa (UK can only recruit carers from abroad now) asked me what had happened to me (MS it’s barely known there). How do you explain what the condition is? I did my best! I still feel I have the essence of me, as nothing can take that away. I understand your uniform story but I’ve never needed one.
All the best.
Benjamin Hofmeister
Thank you so much for that comment Carol! I'm glad the column resonated with you. I have not figured out the best way to explain our condition to other people. I have found that different people require a different explanation. Sometimes I figure out the best way, and sometimes I don't. I like what you said about still having the essence of yourself. I'm quite sure that my identity has changed with my life, as identities are wont to do, but the essence, what makes me, me, is still there and unchanged.