On 10 Years of Living with a Chronic Illness

A significant milestone passed for me recently and I haven’t written or shared about it. 

In June it was ten years since I was diagnosed with multiple sclerosis. 

I’ve had ups and downs with my health in the past ten years, but that diagnosis anniversary has always hit me pretty hard. I think it’s mostly because it sends me back to a time in my life when I was dealing with a lot of emotional upheaval and it forced me to come face-to-face with how not dealing with my emotions showed up physically in my body.

It was really fucking hard. 

But this year, the anniversary came and went, and I hardly noticed. 

I think there are a couple of reasons that happened. The anniversary came while I was traveling. I was also in the midst of starting to see several new practitioners. But I think the main reason I hardly gave it any thought is this: 

I am 100% more in tune with my body than I was ten years ago.

And paying attention to my body allows me to be less hung up on what may or may not happen as a result of a diagnosis. 

Something else happened during the time of the diagnosis anniversary that I have found to be a wonderfully happy and serendipitous coincidence. 

I mentioned that I started seeing new practitioners. One of them is a neurologist. I have not been seeing a neurologist regularly since being diagnosed, which may surprise you, but when I opted out of drug treatment therapy and started working with a naturopathic doctor, a neurologist didn’t seem necessary—especially since he wasn’t supportive of my decision.

I had about eighteen months of symptoms after being diagnosed, but the protocol I implemented with my naturopath got those under control and I have been symptom free ever since. (Fatigue continues to be the biggest symptom I struggle with, but it’s not easy to medically identify what causes fatigue, which means it isn’t necessarily a symptom of MS.) All that to say, I didn’t feel it was necessary to continue seeing a neurologist. 

Earlier this year, my health insurance changed, which unfortunately meant that the doctors I had been seeing were (of course) no longer in-network, and I had to find new doctors, including a new primary care physician. (Don’t get me started on how much I hate doctors and health care—it’s a rant I go on in my book, so you’ll just have to wait to read it there.)

My new primary care physician recommended that, since I had not seen a neurologist, nor had MRI scans since being diagnosed, it was probably a good idea to do that now. I agreed, mostly out of curiosity to see what changes, if any, there would be on my MRIs after ten years. 

I saw the neurologist and I liked him a lot, actually. I got the MRIs—two of them, on two separate days, one for the brain and one for the spine. Yes, everything could have been done all at once, but I would have spent more than three hours in the MRI machine. No thank you. 

Then I had a follow-up with my neurologist. He asked me if I’d been experiencing any symptoms since my last visit. If I’ve had any significant changes. How I’ve been feeling. Anything new he should know about. 

He showed me the MRI scans, and we looked at them side-by-side with the scans from 2012. 

Stable, he said. 

No noticeable change, he said. 

I left the office and cried, and hugged my husband Jeremy, and it felt so similar to that day in June 2012 when I got the diagnosis. We had been in the neurologist’s office, looking at MRI scans of my brain, of my spine, and we left, and I cried, and I hugged Jeremy. 

Only this time I was crying because I was so damn proud of myself. EVERYTHING I have been doing for the past ten years has been working. 

Yes, I have had fluctuations in my weight, and fatigue, and depression. But, just like everyone else in the world, I have had an incredibly stressful couple of three or five years. And guess what stress can cause? Weight gain. And fatigue. And depression. 

All of this hit me last week when I was talking to a friend who asked me about my book and whether I want to write another one. Yes. Yes, I want to write another book. I don’t know exactly what it is yet, but I know it will be something about creativity and storytelling and healing. 

Because here’s what I do know: Words have power. And I know for a fact that words have had a huge impact on my healing. 

I have never once said, “I have MS.” That is intentional. Because I never wanted to own this illness or let it be a part of me. Any time I ever write or talk about my health and healing journey, I have always said, “I was diagnosed with MS.” 

I share this with you because how you speak and write and the words you use directly impacts how your brain interprets your experiences, and I believe words affect our physical bodies on a cellular level. I’m not a scientist or a doctor and I don’t have a study to cite. But I do have the experience of telling myself that I am healthy and strong, even when I didn’t feel it, and then witnessing the manifestation of it in my body. That is what I want my next book to be about. 

How careful are you with the words that you use?  

In the comments, tell me about a specific time you have been intentional with your words and the impact that it had.

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