Sometimes I wonder if people living with MS are truly empathetic toward the people who share their same diagnosis.
Seriously.
So often I read rants from fellow MSers who condemn critical people who don’t have the disease because they, “ . . . don’t understand what I have to live with because I have an invisible illness.”
They hate it when friends, family members and strangers throw out comments such as, “But you look so good,” “Maybe if you went on a gluten free diet,” or “I think it’s all in your head, and you’re just making up excuses.” 
As a person who has had MS for 15 years, these kinds of comments don’t even phase me. I know they’re coming from people who either care about me or from people are just plain ignorant about this chronic disease of the central nervous system.
However, I’ve realized the comments that do infuriate me — and often cause me to lose sleep — are those that come from people living with MS who truly should know better. These comments litter many MS blogs and online discussion boards and ironically are coming from people who expect others to be respectful of their MS and the challenges they are facing.
- “My dad is a holistic chiropractor-without him I’d probably be in a wheelchair!”
- “I worried that I’d end up in a wheelchair.”
- “That is actually a myth that people if diagnosed with MS end up in a wheel chair.”
- “I’m afraid of becoming the person who’s ill, who might end up in a wheelchair, embarrassing and dependent . . . ”
Apparently they’ve forgotten about an important part of their MS population.
Just like that, these people unknowingly called out and undervalued each person living with MS whose disease took away their ability to walk. This essentially also includes every person who uses a wheelchair because of a disease, military combat wound, traffic accident, or any other related situation. Each circumstance was the result of elements beyond their control.
I want to remind each person who makes such comments that even though your illness is invisible, it doesn’t give you the license to make it insensitive.
I get it that these are very real fears, and people with MS who say they don’t have them likely are lying. Yet, when such insensitivity is socially acceptable, we as people with MS need to champion the shift in how people view life if and when they no longer have the ability to walk.
The reality is my wife, Jennifer, also has MS and hasn’t been able to walk in nearly 13 years. Yet, within that time she met me and got married, wrote a book, earned her master’s degree and has presented at conferences in cities such as Washington, D.C., Louisville and Philadelphia.
Not bad for somebody with MS who, “ended up in a wheelchair.”
What if instead of fearing life in a wheelchair, those of us with MS change our thoughts to hoping that we still could lead productive lives if we needed to use a wheelchair? This isn’t to sugarcoat the harsh realities of the challenges that occur in life with a physical disability. Jennifer and I live with it everyday.
I have relapsing-remitting MS, but I don’t fear that I one day may need to use a wheelchair. Jennifer has shown me everything that is possible even if someday I lose my ability to walk. Until that time, I will embrace that my illness is invisible and take it as a complement when people say that, “I look so good.”
I have shifted my focus, and I don’t need to live in fear or anger because my MS is invisible. I have taken control and have chosen instead to make my life with MS one that is empowering. Without or with a wheelchair.
I have often grappled with this issue. That my disease did not progress as expected, that I did not become as disabled as was predicted, left me with a version of “survivor’s guilt”. How I’ve handled it is by giving all I’ve got to helping raise funds for a cure. It is my privilege and my duty as one who has been blessed with an easier path. I would expect no less if the tables were turned. What galls me is those who constantly cry out for sympathy when their symptoms are minor. It is as though their disease is what now make them “special” and worthy of the status of a hero of sorts. Ridiculous. In my journey with this disease, and with the people I have had the immense pleasure of getting to know…it is those from whom this disease takes the most that complain the least. Jennifer is the perfect example. Love to you both!
Important and not commonly thought of point. Thank you for sharing this. It is a valuable lesson.
This is great piece. Perhaps you can help dispel some of the fears of living with a condition that causes the loss of mobility. How do you deal with life in a wheelchair? Can you still drive/get around? How have you had to accommodate your life in order to make things work? How do you care for yourself? Do you have to hire someone to help with self care? How much does all of this cost? Is there financial help? I think these are the questions many people with ms grapple with in advance of having to use a wheelchair.
Very valid points. Awesome you have a positive outlook, also since your wife is using a wheelchair, you are able to see for yourself therefore have first hand experience. For those who fear they might end up in a wheelchair it is very real. Not everyone is able to deal with the unknown. I think it is the adjustments one has to make on a daily basis can prove to be quite daunting. Being positive and staying positive is not so easy. It is such an emotional roller coaster. My husband has MS. He continues to work in a physically demanding job, because he chooses to. The sad thing, the physical things he did for pleasure have become very difficult, eg hunting, tramping, biking, running etc. Love reading MS Blogs, research pages, etc, where we live, my husband is the only person with MS, in a small NZ community of 2000.
I never really thought of it this way. I am lucky to also have a moderate progression and not need a wheelchair currently, but I know it is close. My legs hate most walking and they can hurt for no reason other than I just woke up. I guess I have used the wheelchair as a relief point when talking about my MS. Making light of it to remove the air of uncomfortability that appears when I mention I have MS. I usually defuse the stress with a comment like, “At least I’m not in a wheelchair.” And the other person says, “Right!” And we can go on to talking about something else. Perhaps I need to stop doing that. I don’t see people in wheelchairs as being less of a person but I think my personal fears play a part in how I use it in ‘polite’ conversation. Thanks for the post.
Awesome attitude !!
Beautifully written… Thank you for your insight and inspiration.
I was one who said “I worry that I may end up in a wheelchair.”
Eighteen years later, yeah I use a wheelchair a lot….but it’s not so bad.
Thank you, Dan & Jen, for your hard work & voice on issues of MS and disability. And for erasing the stigma of the “chair.”
Love this blog which serendipitously came across today! Do not have MS yet FMS(fibromyalgia) yet was suspected of having MS in early days due to many of my symptoms. Have at several times needed a wheelchair due to not having the strength to walk long distances yet with that wheelchair have been able to do more than would have without it- like enjoy going around a zoo, or , The Eden project for examples! Run a support group wiht my fellow group leader called Chronic Pain Suppport group on a website Calle MDJunction. Share links to dynamic blogs like this regularly so!
Anyway, though have not MS have had need for wheelchair use many times plus also have been in the situation where others with Fibro have said insensitive words to me relating either to my challenges or daring to be an optimist even though am moderate severe to severely affected! Have a friend locally who has MS(a male friend) and we share many challenges in common with one another, too!
Dan & Jen-Thank You both for your fabulous blog and for not just highlighting MS challenges yet challenges many of us here face with chronic pain conditions!
Very eloquently written as well as poignant!
Keep up the good work, Dan & Jen!
So pleased found your blog today, too!
Hugs from this Fibro challenged individual from the UK, namaste Clara :-)(username on MDJ is Clarita)
Namaste= the light in me honours the light in You 🙂
Thank you for your kind words, Clara! So glad you found us and our blog, and are so glad to meet you! This autoimmune family it certainly not something people want to be a part of, but when we meet new family members like you, we are thankful. While we don’t have the same disease, we all can relate to the challenges we share. Best to you, and we look forward to staying connected with you!