Yes, I Have Anxiety, and No, My Chronic Disease Isn't 'In My Head'

Many people trying to find answers find themselves here. You’re in physical pain, experiencing bizarre symptoms for something yet to be discovered. You lay around with debilitating fatigue, looking to Google to guide you to a health forum with other people like yourself. They understand you.

You’ve already been through a handful of doctors. Some are charming and respectful, tastefully explaining they don’t know how to treat you. There are others who are quite the opposite — you know, the ones you wished you never saw. They question the validity of your symptoms. “Oh, you’re tired all the time? Do you have suicidal thoughts or actions?” You already know what they are getting at but you say, “No.” They try to argue with you, explaining that depression isn’t always being sad but it can be fatigue, too. Again, you protest. They send you on your way with a diagnosis of depression and a prescription for an SSRI. Or maybe you were dismissed like I was when you went to your primary doctor. You had labs that showed an autoimmune disease, but again you were dismissed and later fired by the doctor because they didn’t believe the labs (or even ask to look at them) and thought your only diagnosis was anxiety.

Well, guess what? I do.

I’ve had anxiety since my symptoms arose. I began to get anxious because nobody believed me. What I felt, what I noticed, well, that was apparently “normal.”

I saw roughly 10 doctors before I was diagnosed with undifferentiated connective tissue disorder (UCTD) and later on Sjogren’s syndrome. I was relieved. Let me repeat that. I was relieved. You know that moment you get your acceptance letter in the mail from the university of your dreams? That was me, shaking, crying, and thanking God that someone listened to me. Someone talked with me (not to me), they dug a little deeper and found an answer. All the heartbreak, family members telling me I was lazy, that I worked out and nothing was wrong with me because I looked healthy. (Now isn’t this sad? Was I relieved that I had an untreatable disease? No. Just relieved that what I felt was real).

This was my moment, though. The moment that I actually felt like I could relax for a second and just breathe, because even though there isn’t a cure I still knew that I had an answer, and with that answer I had hope.

I started getting referred to other doctors for my bizarre symptoms. In the end they weren’t that bizarre. Uncommon? Sure. But “crazy,” no. I now have a handful of specialists who help me manage this disease and a year later I’m happy to report that I’m doing pretty well.

Yes, I do have anxiety. I have anxiety when I’m in that moment of pre-syncope and I don’t want to pass out in front of people. I have anxiety when I see a new doctor. I’m defensive and stern when they throw in their opinions. But that’s OK.

The only thing that is “all in my head” is my anxiety and I’ve learned to accept that and cope with it, knowing it doesn’t make my autoimmune disease any less real.

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Thinkstock photo by Favor_of_God