Things Your Doctor Didn’t Tell You About Living with MS

Things Your Doctor Didn’t Tell You About Living with MS

A recent article in The New York Times hit the nail on the head when it comes to describing the world we live in with MS.

But the article isn’t about MS. The Times‘ Tessa Miller writes about Crohn’s disease, a type of inflammatory bowel disorder. Like MS, Crohn’s is an autoimmune disease. Instead of attacking the central nervous system, however, it attacks the body’s digestive system. And Miller’s “Five Things I Wish I’d Known Before My Chronic Illness” mirrors a lot of things I wish I’d known before my MS. I think what she’s written will hit home with you, too.

Following is an outline:

There’s fear of disability and death. There can also be stress over things like paying for medical care or medications. There’s worry about a loss of control over our lives. And there’s the possibility of depression. In the article, psychotherapist Matt Lundquist recommends that a therapist who has experience with chronic illness patients become a member of our healthcare teams.

You might have to give up a career. Friends, and even a spouse, may disappear. “It’s hard to be a good employee when you need extended time off,” the article says. “It’s hard to be a good friend when you cancel plans last minute. It’s hard to be a good partner or parent when you barely have the energy to get out of bed. No matter how much you try to explain, people expect you to get better already — and when you don’t, they resent you, consciously or not.” Sound familiar?

Join the MS forums: an online community especially for patients with MS.

Miller says that people have suggested she try “yoga, meditation, essential oils, acupuncture, CBD oil, vaping, prayer, bone broth and [fill in the blank with the latest fad] diet.” With the exception of the bone broth, I’ve heard all of these suggested as MS treatments. In my opinion, social media can multiply this unsolicited advice problem significantly, providing an avenue for suggestions from people you don’t even know.

“Chronically ill people research their diseases ad nauseam,” Miller continues. “They try more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure. So unless someone asks for your advice, don’t offer it. If you’re on the receiving end of misguided advice, say something like, ‘I appreciate that you’re trying to help, but my doctors and I think this treatment is best right now.’ Or ‘Thank you, but that wouldn’t help. Here’s how my disease works, and here’s the kind of treatment that’s required.’”

These are two of the reasons I write my “MS Wire” column. I learn something every day. I also try to educate others. Unfortunately, there’s a lot of misinformation about MS floating around online (as well as about other subjects). It needs to be discredited. There are also a lot of information gaps that need to be filled. Miller writes: “It was up to me to learn and teach — friends, family, bosses, partners — through conversations, books with passages marked, emails highlighting new research, and social media posts.”

I’m unbelievably fortunate to be married to a woman who’s supported me each and every day of the nearly 40 years that I’ve had MS. But as a columnist, I hear story after story about people with MS who have little support from family or friends, or no support at all. “Chronic illness is really lonely,” Miller says. In many cases, that’s an understatement.

To find support, Miller joined an online community of Crohn’s patients. I can understand that. Even with the wonderful support I get from my wife and the rest of my family, I belong to a few MS support groups. I use them to learn and to share. They include the Facebook groups “We’re Not Drunk, We Have Ms,” “We’re F**in MS Warriors,” and “Lemtrada for MS Treatment.” A support group, writes Miller, “doesn’t just help you feel less alone, but it connects you with resources and provides a place to ask questions and share stories without shame.” But, as I cautioned earlier, beware of information that some people in these groups offer without providing support for their data. They mean well but their information may not be reliable.

What have you learned?

Miller says she’s learned countless other lessons about living with a chronic disease since she was diagnosed. Do you have some things you know now that you wish you’d known years ago? Write a comment and let me know.

You’re invited to follow my personal blog at www.themswire.com.

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

31 comments

  1. Cathy Schroll says:

    Would like to pass this along. I had botox injected into my bladder because I was suffering from incontinence. I tried countless medication but none worked. So happy because it is working and I can go out if just to the store and not worry about having an accident. I can thank God because I would not leave the house unless I pretty much had a diaper on.

  2. Ann WJ White says:

    There is an online support group called Patientslikeme.com that is a source of information, dialogue between patients, positive input, research and more. I joined to have some fellowship. It’s completely free. I joined a DNA/blood study that is tracking the commonalities of what they find to pass data onto researchers. I have MS and Type2 Diabetes and more and it’s been good support.

  3. Linda Walsh says:

    Hi.. thx great article. Living with MS for 40 years.. I was 18.. I have learned. Lol.. a few things. Positivity is major, I have found that living life as happy and normal or what I call..my normal is #1. I research but with a grain of salt and logic.. I listen to my body.. eat well.. enjoy life ..love to teach aquafit. I volunteer at the YMCA. I too have a wonderful husband of 35 years..family, friends, social so important. My therapy for the last 4 years is Tecifedera.. before that copaxone..before that avonex.. Linda

  4. Rachel McCombie says:

    Thankyou Ed, I can totally relate to everything you have written literally. I’ve had MSRR 15 years now…and through my own experience..I unfortunately have lost all my friends along the way 😪 this unpredictable and incredibly cruel illness is terribly isolating..and makes you feel so alone. Others need to try to remember MS is only a part of us and doesn’t define who we are. I’m 41 years old and feel so old before my time. Kind regards

    • Irina says:

      Feeling so old before your time resonates with me. I just turned 45, but it feels like everyone on my blog is past 60 or 70. I hate to say it but I think I will not care if there is going to be cure for MS when I am 80…

    • Kathleen M Black says:

      Know that one! For me it is the fatigue!!! I lose whole days to that. And I work, so on those days I push thru it but then I pay for that when I’m off. I always feel like I’m not doing enough, and having a hard time getting on a regular exercise routine which I know would [email protected]!

  5. Teresa Frolik says:

    I wish I would have known how others were going to act around me. I do feel alone most of the time. People act like it contagious and don’t talk to you. You get left out of many things. Fortunately my husband helps me quite a bit.

  6. SmokeyTheBear says:

    I didn’t even have to see who wrote this to know it was you Ed. I hope all is well. I agree with your review. I have also heard that treatment side effects can be worse than the disease itself. #MSWarrior #MaxiMS

  7. Abbey Jean says:

    I am part of the group We’re F**ckin MS Warriors. They helped me when i was lost. Been part of my life for almost 2years. Love my MS family.

  8. Melissa D. Keith says:

    Thank you for the article. Before my cognitive decline worsened, I was a university English professor, which requires peak intellectual performance. I retired when my weakened intellectual faculties made it necessary. What I’ve found difficult is that healthy friends whose income is more dependent on physical abilities (massage therapist and hair stylist) and who still see me as “smarter” than they are, cannot grasp that I really do have this life-altering disability. One even went so far as to forcefully declare, “You are a healthy, able-bodied person,” indicating that she thinks I am exaggerating the extent of my disability. Losing 20% of my cognitive abilities is devastating for me, and I would have been better off in a wheelchair, strange as that might sound, than with this particular set of cognitive symptoms combined with non-stop lassitude.

    • Ed Tobias says:

      Hi Melissa,

      Reading your post makes me feel soooo fortunate to have had the co-workers, friends and family that I have.

      I’m retired from the journalism profession and I love writing. It didn’t matter if it was a news story, a memo or a thank you note…I loved the challenge of trying to write precisely the thoughts that I wanted to communicate. (Lots of self-editing). Words are beautiful things and I truly understand your pain.

      Best regards,

      Ed

      • Susannah Barney says:

        Thank you Melissa for sharing. I had to accept my cognitive decline and know when to leave my much loved career as a nurse. Needless to say, safety for others was monumental in my decision. Very very hard to leave the workplace, the job I occupied at the time was taking care of our active duty men and women who are serving our country. God Bless and watch over them all, they need our support too. Now i try to find ways to simplify my life and ease my mind. That in itself seems to be my new full time job.
        Life spins on dime and i just really wanted my full dimes worth before i ended the career, ha!! Its okay, just a new journey started.
        Thanks, Susie

  9. Renee clarke says:

    Never say i have m.s i have learnt.. positive mind is the best form of any chronic illness. Im 44 and was diagnosed at 29. I work fulltime nightshift and study time. I have a 10yr old son. My left side is numb and im blind in my right eye. To look at me i am normal. I battle each day but you would never know. I have trained my husband never to ask me how im feeling as i live a crazy life with little sleep he knows when im having a bad day and he will put in an effort to help me. Other than that i train my brain to juat cope.. when life throws you curve balls you learn to go around.. dont let m.s rule your life you be your own ruler.. i like to call it my Mega Sexy disease. Never stop living your lives.. love to all of those battling with a chronic illness

    • Yael says:

      Renee thank you very much for your post!
      Such an optimistic light!!!
      Reminds me I must continue being positive.
      I was diagnosed at 16, I’m 38 now.
      Ms never stopped me from doing anything. I’m happily married, 3 kids, career..
      I’m at a breakpoint the past 2 days since I suddenly can’t walk normally and therefore can’t work .
      Ppl around me and at work don’t know about my MS.
      I don’t really know how to deal. Hope this will pass and I’ll return to normal life
      Thanks for this column

      • Ed Tobias says:

        Hi Yael,

        Maybe it’s time to tell some people at work about your MS. Unfortunately, your MS isn’t going to disappear and, sooner or later, people will need to know why your having trouble walking or having other problems. There’s a Facebook group that’s called “I’m Not Drunk, I Have MS.” That’s because our symptoms sometimes make us look like we’re drunk. You certainly don’t want that to happen, right. :-).

        Ed

  10. Hi Everyone,
    I was diagnosed last March. The new MRI’s are amazing, that they found lesions up & down my spine, I understand, that it is hard to diagnose. Your words, and encouragement help me try to cope. Not knowing for for 30 some years and just turning, now 50, was relief at first and now fighting sadness and fatigue. I first tried Copaxone, soon to try Tecfidera. I am hopeful, yet compelled to read everything. I am learning.
    Thank you all Warriors, Fight On…
    Blessings,
    Lisa C

  11. Susannah Barney says:

    Thank you Melissa for sharing. I had to accept my cognitive decline and know when to leave my much loved career as a nurse. Needless to say, safety for others was monumental in my decision. Very very hard to leave the workplace, the job I occupied at the time was taking care of our active duty men and women who are serving our country. God Bless and watch over them all, they need our support too. Now i try to find ways to simplify my life and ease my mind. That in itself seems to be my new full time job.
    Life spins on dime and i just really wanted my full dimes worth before i ended the career, ha!! Its okay, just a new journey started.
    Thanks, Susie

  12. Renjini.V.K says:

    I was diagnosed MS before 5 years. Now I am 40. Left side is numb with much walking difficulty. I have been working in a bank. Hence there is much stress. I had taken avonex for two years. Now Dimegen is my medicine.

  13. Gale Vester says:

    “Unfortunately, there’s a lot of misinformation about MS floating around online,” you say absolutely correctly. So often I wish there could be a bullsh!t-detector online, and not just about MS but about anything medical or scientific, but it could just as soon be turned upside-down.

    I’ve been dealing with this for a decade now, and I’m running out of energy to fight it. Whether or not there’s a cure for it next week or next month or next year, I’m not much likely to see any improvement in my own being. Seeing all of these warriors online is good for those who find good energy in taking part, but I am sick and tired of being sick and tired, and I’d like nothing better than to call it quits. Truthfully, I am not going to do anything about that, but the reason is more cultural than personal.

    At any rate, reading your column here does give me tastes of hope, so thank you for writing it.

    Best,
    Gale.

    • Ed Tobias says:

      Hi Gale,

      Thanks for taking the time to drop a note.

      A BS filter would be very useful for social media, and not just medical or scientific posts :-). I try to act as a human BS filter as much as I can.

      I’m glad that what I’ve written has given you a taste of hope. Take a big swallow and please keep in touch.

      Ed

  14. Erica Carlis says:

    I needed to read this article today, so thank you Mr. Tobias! Although I’m familiar with everything MS can bring, it still cuts like a knife sometimes. I feel like a spectator in my own life, and that eats at my soul more than I care to admit.

    • Ed Tobias says:

      Hi Erica,

      I’m glad that my column helped you a little. Really, it’s not my doing. All of the “heavy lifting” was done by the writer of the NY Times article. She really has a good handle on what chronic illness is all about.

      Ed

  15. Kathy says:

    I really love your insight Ed! I just turned 60 and was diagnosed at 29. Everyone makes their own choices and for what it is worth, here is insight on mine:
    I do not share that I have MS with anyone, except family and a few close friends. It works for me.
    No one at work knows it and I like it that way. No discrimination.
    I use a knee walker to get around. I can get to meetings at work quickly and it provides a means of exercise.
    I work from 8 to 5. I used to work longer, but wanted quality. I do read up on MS news as much as I can.
    I have a supportive spouse. I do stay positive. The glass is half full and a majority of people have worse health issues that I do.
    My advice to people with mobility issues: try a knee walker.
    One other insight: of you like to travel, try Sage Travel. My husband and travelled to Europe and they made it easy!

    • Ed Tobias says:

      Hi Kathy,

      I’m glad that you like my insights, Kathy, and I’m pleased that you’ve shared some of yours.

      But I have a question. When you’re using your knee walker don’t people ask why you’re doing that? Since you’re not sharing your MS, what do you tell them?

      Ed

      • Kathy says:

        Great question Ed! Yes, they do. My honest response is: I had a strep or staff infection in my right leg, over 25 years ago, that caused a weakening of the nerve and leg. Then, 5 years ago, my left leg (my good leg) suffered a meniscus tear, and I learned after 4 surgeries-bunion and hammer toes, that I can efficiently navigate on a knee walker much better than a wheelchair. By this time, the person who asked me is bored and their eyes are glazing over. This is true testimony that I have to provide to people (I don’t even know, most of the time) many times a month. A word to the wise: be cautious on a knee walker until you get experience, it can tip over.

        • Ed Tobias says:

          Well….it would take a lot less time to tell them you have MS. Of course, then you’d have to put up with “I have a friend who has MS” or “I’ve heard about this great diet that will cure MS” or….. :-).

          I use a scooter. Faster and less prone to tipping!

          Ed

  16. Adam says:

    I love this article. A great read. I haven’t told very many people about my MS, just family and close friends. Although, I feel like I probably will have to tell more people in time. I find myself obsessively researching this disease as I would worry about the future. I was diagnosed four years ago. Was very tired in the beginning. It was excruciating. I have since made some huge lifestyle changes, new job, better working hours. I eat very clean, which I believe has made a huge difference. I exercise every other day and try to live a stress free life. I’m not on DMDs but they terrify me.

    • Ed Tobias says:

      Hi Adam,

      Thanks for your note. There are a lot of ways to deal with MS and I think we all follow our own treatment paths. It’s great that you’re doing well with your lifestyle changes but please don’t allow DMTs to terrify you. I wish DMTs were available when I was first diagnosed. I may have had a slower increase in my disability level had I been able to use one from the very start. I’m not suggesting that you do this but you and your neurologist (hopefully one who specializes in MS) need to work as partners in your treatment. There may come a time when a DMT will help, so please do what you can to replace being terrorized with being well informed. (And don’t allow negative posts on social media sites to scare you. People with negative experiences are much more likely to post than those for whom things are going smoothly).

      Ed

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