MS Transparency: How Open Should I Be?

Do I walk over and explain to the dude in the garage—the one who’s been giving me the stink eye ever since I pulled into a disabled parking spot—that, while I appear to be healthy, I actually have MS?
 
Do I tell my students what’s going on when I’m pressing my icy drink against my neck to cool me off while I’m teaching inside an overheated classroom, fretting about whether my MS heat sensitivity will flare up?

I face these situations quite frequently, wondering whether I should explain my MS to people so they will understand my actions and reactions, or if I should just keep quiet.
 
Four years into my MS odyssey, I haven’t yet found the sweet spot. I’m torn between the concept of total openness about my situation, and just wanting to live my life as best I can without making excuses or explanations for things I cannot control. It’s not as though I’ve hidden my MS from the world. I’ve had pieces published—and shared them on social media—discussing my experiences with the disease. But writing about it is not the same as telling someone in a moment when I’m experiencing something related to my disease, that this is what MS looks like for me today.
 
Do I need to tell the clerk at the grocery store that I’m not intentionally dropping item after item onto the conveyor belt as some sort of indication that I’m impatient with her work; I’m simply having a clumsy MS hands day. Or is that too much to share with someone who’s bagging your onions, orange juice and window cleaner?
 
I admit that my perspective on this subject may be skewed because I spend a lot of time thinking about MS when it interferes with my daily life. People who know I have MS tell me the disease doesn’t automatically come to their minds when we’re interacting because I don’t look sick most of the time. However, I worry that when I cancel plans at the last minute because of fatigue, they won’t understand it’s MS-related (and not laziness) unless I explicitly tell them. I don’t want them to misinterpret the cancelation and think I just don’t want to see them.
 
One of my close friends thinks I should be more open about MS, particularly with my college students. She suggests it would be a great life lesson for them to realize that, as I energetically discuss the day’s news with them, I’m also living with a chronic illness that sometimes affects how I move about in the world. There was one recent day when I almost took her advice. The classroom was getting really warm and uncomfortable. I removed as much clothing as is socially acceptable and sucked down my cool drink (I always bring one to class.) Nevertheless, I started feeling lightheaded, weak, nauseous and as if the speed at which I was processing things mentally was slowing down. I considered explaining why I felt this way.
 
But I chickened out.
 
The students probably would have been fine with the disclosure and would have welcomed a short break. But as I played the scenario out in my head, I envisioned this MS revelation as potentially having a negative effect on teaching evaluations, as emboldening some to challenge grades based on my illness or to question whether MS was the reason it was taking me so long to review their work. In reality, I put in a lot of effort for my students and try to overcompensate for any obstacles MS puts in my way. So, would anything bad really have happened had I told them about the MS? Likely not. But you never know.  
 
The closest thing I’ve done to being transparent about my as-of-now invisible disease is to print out two pieces of paper and slide them in the front windshield of my car whenever I use my disabled parking placard. One features a colorful orange “Multiple Sclerosis Awareness” logo, the other features the black and orange logo for the National Multiple Sclerosis Society, underneath which I’ve written, “I have MS.” These thin pieces of paper represent the sum total of my attempts to dissuade any would-be nasty-note-writers from tucking a menacing missive beneath my windshield wipers.
 
I’m not sure there is one correct answer. I’m also not sure I should be worrying so much about what people are thinking when I experience an MS symptom or take measures to avoid triggering one (by taking an elevator up a single floor or utilizing disabled parking). However, I am sure of one thing: I am fortunate to have this choice because not everyone with MS does. Deciding what to do and how to react is a privilege.
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Meredith

Meredith O’Brien

Meredith O’Brien is a Boston area writer and journalism lecturer. She is a die-hard Red Sox fan who lives with her husband, three kids ,and two noisy dogs. Her fourth book, "Uncomfortably Numb: A Memoir," about her MS experience, will be published in March 2020. Follow her on Twitter @MeredithOBrien, or visit her website at mereditheobrien.com.  

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    15 Comments

  • Johan   Mar 13, 2019 6:41 AM
    The answer to this question, I think, is like the disease itself, a snowflake. It depends on the person and the situation. However, I find that people have no idea what it’s like for me to live with MS. They nod their head and say they understand but then they say or do something that tells me they have no idea. Yes, I want people to know there’s a reason for why I do what I do sometimes, namely MS, but I also believe what people think is none of my business. It is a pickle. I suppose I will just keep continuing to continue and see what happens.

    JE
  • Avatar
    MSbaby18  Apr 9, 2019 9:46 AM
    Hi Meredith!
    After reading your blog I find that this topic is a really important one and should be discussed within the MS community. As a non-transparent, yet very debilitating, illness, it should be dealt with in the most effective ways that we can. However, I also find it to be difficult. I am still in school and find it very difficult to show up on time to school and to concentrate. I notice that my gait has slowed down significantly, so I cannot run to catch the last school bell before class starts. In terms of concentration problems I would say that my brain does not process as much of the class lecture material that it should and it is very obvious to my teachers. I have been asking myself whether I should approach the teachers and mention something about my MS and how it is debilitating, however I am held back from it because it would just simply be embarrassing. Should I do it despite my hesitancy?
    I am a strong believer that it is important to acknowledge the fact that some aspects of life will be affected by the MS and be open about in in such circumstances that would be helpful in similar situations.But it is always helpful to know the boundaries. What is your take on this?
    Looking forward to your opinion! Meanwhile, i really appreciate your openness on the blog and it ha been very helpful for me. Keep on rocking'! :-)
  • Avatar
    jasonprestovfd  Jun 23, 2019 5:33 PM
    Meredith,
    I struggle with this all the time.
    There isn't a one size fits all answer to this question. For me it depends greatly on the who they are, when do you tell, & why do you want to. I have alot of people who know about my MS, but even more who don't. I have people that I've known all my life that I haven't told, but on the flip side some people I've only know for a few months that know. Recently someone I've known for a few years asked why I'm using a cane now, I explained that I have MS & my leg just doesn't work sometimes. I was completely shocked when he told me he was diagnosed with MS in 2011 (same as me). We talked for the next half hour or so comparing our progression & we both got a lot from the conversation.
    Its always up to us if we share our MS or not, but its suprising when the person you decided to tell, decided to tell you the same thing.
  • TCS   Aug 1, 2019 10:58 AM
    As a father of a 22 year old son, who was just dx a few months ago, I want to scream from a mountain top "Don't F with my son, he has MS" But obviously I cant and wont do that to him. I did however, work extensively with his college, at looking back at his last year's poor academic performance and was able to reverse a large amount of negative grading and attendance issues. For about a year prior to dx, he strangely turned into a lazy college kid that was late to class, lazy and unfocussed but once we found out what was truly happening, everything made sense. The school was very understanding and worked with him at analyzing every sing poor grade or tardy to class and paved the way for him to hopefully attain his degree.
    So in this case I was very glad that we spoke up....As far as my son's everyday life and what he decides to tell people, well that's up to him and is a day to day decision that only he can make. I will support whatever and however he chooses to live his best life!
  • Sandy   Aug 1, 2019 11:03 AM
    I wish i could share my diagnosis. I feel as though i could be a role model. At my my last job my manager knew of my diagnosis. She told me she would not consider me for a promotion because of me having MS. This has made up my mind to not tell anyone.
  • Michael   Aug 1, 2019 12:49 PM
    I know exactly how you feel, I been living MS going on 4 years now. I am now just getting to the place where I will tell people I have MS. I only tell someone if I can['t do something for myself like getting my debit card out of my wallet at the register in the store or last week my tire needed air and I could not operate the air hose and asked the guy in front of me if he could do it for me.
  • Shawn   Aug 1, 2019 2:02 PM
    Sandy, a couple of comments. 1) Your manager should not have told you that. Unless there were some special circumstances that would prevent that company from making a reasonable accommodation for that position, that seems like it's likely a pretty strong violation of EEOC laws and could easily result in a discrimination lawsuit. However, I am not a lawyer, so please don't take my statement as legal advice. 2) Honestly, if an employer used their misguided beliefs of my "disability" to pass me over for anything that I felt I was capable of doing, I'd start looking for a new employer. If your job doesn't support your MS, then it won't leave you in a good place.

    I was diagnosed in 2012. I'm a programmer, so my job isn't physically demanding, but it's very mentally demanding. When I was first diagnosed, I didn't want to say anything to anybody. I didn't want to appear "broken" or "weak". However, I came to realize that my occasional outward symptoms (like slurred speech, sleepiness or unsteady walking) could be easily misconstrued as an entirely different issue that would likely result in a visit to HR and an explanation from me anyway. I felt that the damage to my re*****tion from keeping a not-so-easy-to-hide secret just wasn't worth it. So I tell my co-workers and my bosses up front that I have MS. I do my work to the best of my ability. I don't try to pretend that nothing is wrong on days when I feel poorly. And I am significantly more cognizant of the things that will set me off. I don't work 14 hour days. I try to take more breaks, and I try to stay cool.

    I am fortunate that I work for an employer who allows me some flexibility and values my quality of work more than my clock-punching skills. But the expectations go both ways. They still expect me to do the job they hired me for, and I expect that I will sometimes have to fall back on their flexibility to get that job done. But I will. I'm not viewed as any less of an employee on my bad days, because they know where we all stand and that MS is something that I can manage.They understand because I've talked to them about what my MS means.

    And I've found, more often than not, that I am not alone. Like jasonprestovfd has experienced, some of the people I've talked to are familiar with MS either through themselves or through someone close to them. And they have found as much support talking to me as I have found from them.
  • Nikki   Aug 1, 2019 2:39 PM
    I have been extremely conflicted with this subject too. I don't want people thinking that I'm making an excuse for myself or my actions but it is just something I can't help. I am extremely blessed because I can live an active life even though I have an aggressive form of primary progressive MS but there are people that see me being so active and think that I am just taking advantage or trying to get sympathy when I tell them about my limitations at times. Being a single mom to an active 12 year old daughter forces me to find the energy deep down but then people perceive me as being lazy when I sit down more or ask for others to grab something for me. Living with this disease since I was 19 has been extremely challenging but getting others to understand these challenges has been an even greater conflict.
  • Gloria Roebuck   Aug 1, 2019 5:01 PM
    I thank you for sharing your experience with us. Very helpful. I am a caregiver for my son. Jan 5, 2015 changed our lives. My son and his wife separated She asked him to move out he came to live with me. On that faithful day I made a deal with him rest Mon 1/5/2015 & 6th and the 7th I was putting him in the hospital. I new he was not a lazy person (as his then wife thought) He has been a type 1 diabetic insulin dependent (now has a insulin pump) since age 12. And I knew something else was wrong. Hospital 1/7/2015 admitted. Jan 8,2015 (his 48th birthday) doctors came in Progressive MS. Shocked needless to say. He is now in a wheelchair can not walk but his spirits are always up. I read everything I find about MS. I thank you Ms O’Brien for your blog very helpful for me. G. Roebuck
  • michael   Aug 1, 2019 9:12 PM
    Thank you for writing about something I deal with every day. I work in a physically demanding job filled with a lot of testosterone filled dudes who look down on anyone they feel isn't cutting it. I'm older than most of them and can outwork any of them when I'm having a good day, but when i'm not. It can be a real *****. Most of the time, I just flip that mental switch in my head and motor through but sometimes I just have to sit and take a break. Keep up the good fight and know you're not alone in how you feel.
  • MLW   Aug 1, 2019 9:39 PM
    To share or not to share that is the question? It is a choice and I follow my intuition. A great practice in listening to what feels right for me in any given moment or situation. If I am not available to to share, I will keep my boundaries and if the energy is right I will share openly and honestly. I don't consider MS a secret and I always have the right to be private and selective. It's been a 20 year journey and probably even longer than that. Life presents challenges for everyone. Be the best you can be. greet each day with gratitude.
  • Jane Johnson   Aug 2, 2019 12:56 AM
    I'm desperate for a ramp and was told the MS society "funds ramps". After I completed all the paperwork was told, no we don't fund ramps. Just about 20% of the cost. Make payments she said. Well if I had the extra money to make payments I wouldn't have asked for help. I don't have the money to do it. Oh well, what's a few more broken bones due to falls. By the way, my car is 17 years old. One more thing my MS has taken away from me.
  • Sarah   Aug 5, 2019 11:31 AM
    Sandy -

    I am a Human Resources Administrator, and Shawn is very correct. Your manager is in violation of the FLSA, ADA, and EEOC.
  • Michael Aikens   Aug 7, 2019 2:40 PM
    Good afternoon Meredith!

    MS is a progression. I have had MS since the mid 90s and my willingness to share has progressed from secret to every one asking "Why are you using a cane?". When I let every one know what was going on I felt a load come off my shoulders. The reality is that it didn't take long for people to forget. I guess the worrying was for nothing. Manage the stress don't worry about work.
    Mike
  • Annette   Aug 7, 2019 7:18 PM
    I really appreciate reading these stories about my MS because I too deal daily with people saying that they understand but they do not. When you can not do as they do or I can not see sometimes or walk or talk as they think I should . I have stop explaining . So thanks for giving us with MS understanding us. It's been twenty years most mornings I feel like I can't make it most nights I can't sleep ,But I am thankful. Thanks