After the Diagnosis: How to Cope with a Life-long Illness

It's funny how three little words can change your life. I heard those words for the first time in 1998, after struggling through a year of tests, dead-ends, questions, suspicions, and so many doctors saying "I can't find anything wrong" with a look that said "you're faking it," that I was starting to get paranoid and wonder if I wasn't crazy.

If my primary care doctor hadn't known me since I was a kid, I sincerely think that she would've given up on me, too. But she knew I wasn't the type to malinger, and she stuck with me until we finally got the diagnosis from a disease specialist, who had been testing me for everything from AIDS to shingles. He ruled out all the other things, gave me the tender point test, and said those three words to me- and then shuttled me off to my primary care doc, who knew as little about fibro as I did, at that point.

Thankfully, she was a good doctor, and she did research. Unfortunately, back then, there was little to find out. It was an illness with a lot of questions surrounding it, and there were a lot of doctors who didn't believe it was real. My doctor decided that if her colleague thought it was real, she'd run with it, and she started me on the prescribed therapies- physical therapy and prozac. Unfortunately for me, I was undiagnosed bipolar, and prozac does horrible things to a person with bipolar disorder. We tried a few other anti-depressants, with similar results, but the physical therapy was helping (a combination of heat-therapy and massage), and I started feeling better, so I went off the drugs. That didn't last long enough at all. The pain came back, and it was worse. I ignored it. It would go away, right? It went away before, sort of...

I was in denial, hardcore.

And for many of you, who are being diagnosed with either fibromyalgia, or a similar illness, denial will be the first step of your journey, too. "They got the diagnosis wrong," if your illness was easily diagnosed. "I'll find something that will help me," if the illness is difficult to treat, like fibromyalgia. Some of you may even react as a friend of mine did, and deny the diagnosis altogether.

Others of you, lucky you, will skip the denial and move to the second stage... Anger. What's that, you say? You know these stages? Yes, that's right, you do. Being diagnosed with a chronic, incurable illness does send you into the stages of grief. It's very much like having your old self die, and you must grieve in order to move on, in order to be able to come to grips with the new you.

Those of you who will be angry at this diagnosis will likely be furious. You'll rage at the doctor, or at your friends. You'll declare that doctor incompetent, and get a second opinion. You'll demand that something change, now! You'll rail against your helplessness. I've been there; heck, I'm still there, some days. I was furious once I got past the denial. I demanded a treatment, any treatment that would make this pain go away.

Nothing worked.

I moved, very quickly, into bargaining. "Please, God, if you just take this away, I'll be good for the rest of my life!" I wonder how many times He hears that prayer every day. I tried a dozen "quick fix" cures. I tried fibro pills, I tried guaifenesin, I tried so many things. Nothing worked. Nothing made it go away permanently. I bargained. "If I am a better person, maybe it'll go away." Nope.

I went back into anger- and many of you will have this happen, too. You will move into bargaining, try to find a cure, find a way to treat yourself, find any way to get help for your condition- and when you fail, you'll get angry again.

Don't be afraid of the anger. It's natural. Just try not to burn any bridges with it- don't turn it on your friends and loved ones!

My anger faded quickly into stage 4. Depression.

This stage is dangerous. Before you reach stage four, please- make sure you have a good support group around you. The best thing you can do for yourself, regardless of what illness you are diagnosed with, is find a good support group of people who also have it. Because when you hit depression, you can do a lot of damage to yourself and your relationships, because you simply cannot SEE what you are truly doing. You can't see the forest for the trees- you are depressed, and you have no energy and no context for what you are truly doing to yourself and those who love you.

I didn't know I was depressed. I thought I was dissatisfied with my job, so I tried to get another job. When that fell through, and I had already left the first job, I found myself aimlessly wandering the internet, searching for a new job. It was the worst 3 months of my life. I look back, and I can see that I was depressed- but then, I just knew I didn't have any energy, didn't really care that I wasn't working, and didn't really want to do much anyway.

I finally got out of the depression by finding a job, and that helped a lot. Even though I was hurting and tired a lot, I could still work, and that helped. My life settled into a pattern, and things were stable. That lasted through a move to Dallas, which necessitated a job change, a move back to Tampa, and then poof. My life went up in smoke- I got appendicitis, and after the surgery to have my inflamed appendix removed, I was never the same.

I went through anger and bargaining and depression again. I struggled with my new job, trying to maintain a good work ethic when my body suddenly wasn't cooperating- and worse, things I could do one day, I suddenly wouldn't be able to do the next. Migraines began striking me with more and more regularity, and greater fierceness. It was a disaster.

I finally gave up when I was fired from 2 jobs consecutively, the 2nd one a job I really loved. On October 13th, 2002, I achieved acceptance of my illness, and realized my life would never be the same. I still struggle with anger and depression occasionally- and you likely will too. Living with a chronic illness is never easy.

But you can overcome it.

A question that a friend told me about seeing on a television show stuck with me. She said that the woman on the show said "My Mother asked me if I wanted to be a person with a disease, or a diseased person." That's a choice we all face. Me, I'm a person with a disease. It makes my life uncomfortable sometimes, and other times it's downright miserable.

But I have fibromyalgia. It doesn't have me.

You have your own illness to bear- it doesn't have to define you.