What I’ve Learned From Having an Autoimmune Disease

Updated: Nov 14

All last year, I was not feeling like myself. Granted, it was a very stressful year. My nephew was born 10 weeks premature - a miracle 2 pound baby that is now happy and healthy and just celebrated his first birthday. But, for the first five weeks while he was in the NICU, I tried to take care of everything so my brother could focus on just being with his baby.

My anxiety skyrocketed. I’ve lived with anxiety for most of my life, so I wasn’t surprised when I started to notice my heart rate increasing, my body shaking or the feeling of a sudden panic attack surging. The symptoms felt different from the severe anxiety I had in the past - but the thing about anxiety is, it can feel like so many different things. So, I didn’t suspect that anything other than anxiety could be the cause.

Even after my life settled down, the symptoms persisted. Climbing a few flights of stairs could make my heart race so fast I’d have to stop and sit down. Some days I found myself lying down for hours, feeling overwhelmed by the thought of doing anything at all. My usual process wasn’t working: the therapy, meditation, and even my medication didn’t have much effect. Still, I figured it was just an especially severe phase of anxiety that would pass.

Fortunately, I do a physical every year with a full blood panel because my family has a history of high cholesterol. This time, the doctors noticed my thyroid levels were unusually high. After a series of tests and meeting with an endocrinologist, I found out I had Graves’ Disease. My body is creating antibodies that attack my thyroid and cause all sorts of symptoms that largely feel a lot like anxiety.

The first big lesson from this experience is: if you’re not feeling well for a while and your usual things don’t seem to work, always check your blood. Something else might be going on with you that a doctor can treat. When I started on the thyroid medication, the symptoms went away in what felt like days. My resting heart rate dropped from the 80s to the 50s in beats per minute. This had a huge effect on my overall feeling of calm and wellbeing.

I’ve also learned that autoimmune conditions are more than just HIV. The National Institute of Health counts at least 80 different kinds, affecting more than 24 million people in the U.S. in very different ways. We also don’t know the exact cause for many of them. In my case, Graves’ is often connected to a stressful life event before the age of 40 (definitely true of me), but we don’t know why. Everything from diet, genetics, environmental toxins, to sunlight are considered potential causes. Also, the prevalence of autoimmune conditions seems to be rising, also for reasons we don’t understand.

For most of these, we have no cure. In my case, we hope that with 18 months of medication the disease will go into remission and my thyroid will function normally for the rest of my life without need for medication. But it could restart at any time, and then I’d either need to stay on medication or remove my thyroid. Of course, it’s scary to think of carrying a lifelong condition that could get worse at any time. I’m grateful that we have treatments for my condition that will probably let me lead a normal life.

It’s a very helpless feeling to know your body is attacking itself in a way you can’t control. I now feel great empathy for all the people suffering from health conditions outside their control, including all the people with weight problems. Our bodies are far more complex than we understand, and much of what they do is outside conscious control. I can’t tell my body to stop producing this antibody, at least not directly. The best I can do is speak to my body through its language - changing what I consume (including medication) and how I live. But sometimes these things don’t work, or what works for one doesn’t work for another, and we simply don’t know why.

I feel a renewed sense of dedication to my health, and also a humbling feeling recognizing how hard it is for me to drop unhealthy habits. I want to do whatever I can to help my body heal… but I also want to have fun. I’m learning to value healthy fun, albeit slowly with a lot of backsliding into unhealthy habits. I feel more deeply connected to others who are suffering, in any way, and again feel a deep commitment to serving them however I can, to help them find their peace.

If you or someone you know is suffering and feel helpless to control it, know that you are not alone. Many of us know that feeling intimately, or we can empathize. We are here to support you, with love, to find the joy and the peace you deserve in this life. We may suffer still, but with love, support, and moments of deep joy, this life is yet beautiful.

About the author: I am a person of the world with a window that allows me many lives. Music and good food are why I'm still here. Apples are my arch enemy.


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