My Identity Before and After My Diagnosis

My identity was challenged by TED

I have always prided myself in being a capable and healthy person. When the symptoms of Graves' disease and thyroid eye disease (TED) started, I immediately searched for answers.

I saw doctors who believed my symptoms and supported me but in the end could only shrug their shoulders and admit they had no answers. Then I also saw many doctors who suggested without words that it was "all in my head."

During this lengthy process the "all in my head" symptoms continued to be painful and debilitating. My heart was always racing. I ate voraciously and continued to lose an unhealthy amount of weight. My eyes were bulging and I didn't look like my normal self. I was exhausted and scared.

After two years of doctor visits, I was finally diagnosed. It was reassuring to prove I was not a hypochondriac but my identity had taken a hit!

My thyroid eye disease diagnosis chipped away at my identity

Finally, I had a diagnosis! To me this meant I would get treatment and I would be back to my healthy self. If only it were that simple. I learned that millions of Americans are living with an autoimmune disease and this is a condition in which one's immune system attacks healthy tissue. I also learned that there is no cure for my Graves' disease and thyroid eye disease. All of this seemed inconceivable to me.

Why would my own system attack itself when I had always been mindful of living a healthy lifestyle? This just did not align with what I believed about my health and who I was. How do I incorporate this into who I have always been? How do I live with this? It seemed I was no longer in control of my health and this felt unacceptable.

Striving to get myself back

Still hanging onto my old "in control of things" self, I forged ahead with a new agenda of learning everything I could about my autoimmune diseases. After all, the old me would beat the odds! If I followed all the rules, I was convinced I could put these diseases behind me.

I just could not embrace the "NO CURE" phrase! My efforts included always taking my methimazole and changing the dosage, when needed, in hopes that the Graves' would go into remission. It included undergoing all the surgeries to restore my damaged eyes, following an anti-inflammatory diet, stocking up on vitamins, exercising and strength training, and so much more. But here I am, 5 years after my diagnosis and I am still managing both the Graves' and the TED.

The Graves' disease never went into remission and I am still taking the methimazole. My TED is in remission yet I still have to manage the aftermath which is dry eyes and sensitivity to light. I put up a good fight but I had to learn that MANAGING my 2 autoimmune diseases is part of the new me.

Accepting management as part of my identity

Through all of this, I have learned I cannot deny Graves' disease and thyroid eye disease have taken a spot in who I am. Of course, they do not identify who I am but they do play a role in my identity.

Now I put my energy into managing them successfully to keep my health at its best. I get my thyroid levels checked so often that the lab technicians know me by name. I keep up with my endocrinologist appointments as the nodules on my thyroid are closely monitored. Medication had never been a part of my life and now I have accepted that I must take my thyroid medication daily and I (almost never) forget.

For my TED, I continue to take selenium daily and keep my sunglasses and eye drops handy. I have accepted that one eye is left with a slight bulge (I've given up on perfection).  

Acceptance and management has helped me embrace this part of who I am. Holding on to my old identity would only affect my quality of life.