Why I No Longer Wish for Perfect Health in My Life With Fibromyalgia

I can’t remember the last time I wished for something other than “my health.” You see, I’ve had health issues and the last thing I wanted was to have them again.

But this year, I didn’t wish for my health. This is the year I developed a chronic health condition. One minute I was fine, the next minute, I felt intense neck pain. Over the next few weeks, it spread to my whole body. My doctor had no idea what was happening. None of the doctors at the practice did.

After much persistence, I got a National Health Service (NHS) appointment with the spinal unit. Their verdict? Everything’s fine. Which was good, in some ways. In other ways, it was a bit of an “Oh. Well, what do I do now?” moment. It had been going on for three months now, so it could definitely be classified as chronic pain.

It was only when I was researching someone else’s condition that I suddenly had an idea what it was. One of my Twitter followers has fibromyalgia, and when I looked to see what this was, I suddenly had a revelation. These were my symptoms. I have not yet received a diagnosis, as NHS waiting lists are normally eight months long.

So I went on the Internet. I’m grateful to a blogger named Sam Cleasby who has posted information on living with invisible disability. I also found a lot of fibromyalgia-specific information on Julie Ryan’s website Counting My Spoons. I read so many accounts of people’s fibromyalgia experiences, such as it takes forever to diagnose and older doctors may not have heard of it.

I also read many articles on disability on this website and found these accounts to be extremely useful. The more I read, the more information I gathered about how to live with a chronic health condition. I happen to follow spoonies on Twitter anyway, so I reached out to them for advice and help. This, too, has been invaluable. As I read during one of my many chronic condition/disability research sessions, the only people who can truly understand chronic health are people who are chronically ill and disabled.

It has taken me a full year to come to terms with my situation. There have been many dark moments, and there will be many more, but like every “fibromyalgia warrior,” I’ve learned I am a strong person who is more than capable of coping with my new situation, or with any situation. I’ve learned not to feel bad if I have to spend the day just watching TV. There are some days I can do things almost like I used to, and some days I can’t.

Most importantly of all, I’ve learned that perfect health isn’t the be-all, end-all. You can live a good life with mediocre or even poor health. And that is the reason I didn’t wish for my health. I’ve learned to cope with my varied health.

I would tell others in my situation to stay strong. Doctor’s appointments are not easy to get in the U.K., so my primary support, advice and information came almost entirely from the Internet. If you have no local support, the Internet has a whole world of information. Remember to be very careful using it, though, because it’s a world of information and also a world of misinformation, too.

As us “Supernatural” fans say to each other, always keep fighting — for medical professionals to listen to you, for people to understand and to find answers or a diagnosis.

lisa wilkinson

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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