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

Columnist Ed Tobias shares a recent New York Times article he found quite relevant for showing what it’s like to live 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.

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?

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.’”

Read on: Things Your Doctor Didn't Tell You About Living with MS

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