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:
The mental is as hard as the physical
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.
Your relationships change
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?
Everyone offers advice
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.’”
You have to educate yourself — and everyone else
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.”
Support is everything
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.
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