A woman only shown in outline against a dark background is helped up from a seated position by a person offering her a hand. The hand also gives off a glow that fills the woman with positive light.

My Struggle and Success to Stay Positive While Struggling with TED

Last updated: December 2022

I admit that Graves' disease and thyroid eye disease (TED) challenged my natural positive attitude. The symptoms are relentless and unforgiving. Graves' wore me out with the struggle to regulate my thyroid levels with medication. Daily medication had never been a constant for me. I followed the doctor's orders but my body didn't cooperate...a strike against myself. Once diagnosed with TED after an exhausting two-year search, I was desperate to get my eye symptoms under control. Again, I did everything my TED specialist advised but TED was stronger and more stubborn than me.

Struggling to stay positive with thyroid eye disease

Despite all the surgeries to repair the damage to my eyes, I realized my eyes, and my face would never look "Pre-TED" again. As I write this, I again feel the despair I had been feeling. I understand now and give myself a pass. Yet, during this struggle, and still, I realized I needed to search for some positives before my body and mind acquiesced to depression.

I was grieving the healthy and strong me of the past. Deep down there was some strength that pushed me to read articles about others with chronic illnesses and how they coped. I also searched for mental health articles about how to cope with long-term illnesses. Gradually I was able to put some steps in place to help recapture my positive self. I hope by sharing these steps I can help rekindle some positivity in your life also.

Staying positive during my TED journey

Get the support you need

For me, this meant joining Facebook groups and websites of people who had Graves' and thyroid eye disease. Through these groups, I learned so much about each disease including the symptoms and what to expect. I learned worst-case scenarios and best-case scenarios. The most empowering understanding I got was that "I was not alone".

Be proactive about putting together a game plan for mental health

I knew from my research that patients with depression have a more greatly suppressed immune system. I knew my depression was going to make it more difficult for my body to recover and I still had a long road of surgeries ahead of me. I had to be honest about my mood and anxiety so I could help my body fight and recover. My endocrinologist was so helpful and understanding. Her most healing statement to me was, "It is common for patients with chronic illness to struggle with depression." I felt like her acknowledgment gave me the push I needed to talk to a therapist for a while. This also enabled me to talk honestly with the people closest to me. I quit saying I was "fine" through a strained smile and somewhat distorted face. Your journey with mental health may be different but the key here is to not ignore it.

Manage symptoms

My past self seldom took OTC medications. I learned with these thyroid eye disease symptoms there was no advantage to toughing it out! When I had pain in my eyes with accompanying headaches I took Tylenol. When my eyes were super sensitive (always) I used teardrops, gel drops, sunglasses, and sun hats (always). For the retracted eyelids I used gel drops at night before I put on my eye mask. I learned to treat my symptoms so I could function better throughout my days. It's important to speak to your physician about the best way to manage your symptoms.

Make goals

Goals gave me hope which I needed while in the depths of thyroid eye disease. Quite honestly my ultimate goal was to feel better and look better. If by treating my symptoms I could feel better this week than the past week, that was an achieved goal. Taking care of myself daily meant I could be best prepared for surgery down the road which gave me hope to look "normal" again.

I also had a goal to maintain a strong body. I achieved this by going to the gym. I was the one working out with sunglasses on. Somedays I achieved my goal by working out for an hour and other days for a mere twenty minutes. Celebrate even the smallest achievements.

Another goal I set was to stay connected to my family and friends. I didn't always make it to my book club meetings and other occasions but I celebrated the "most" times that I did.

Your goals may be completely different than mine but do tap into them. Without goals, we have few achievements.

Take up a new interest

As we know TED can be all-consuming! To offset marinating in TED day and night, I started playing the organ again. This was a childhood hobby I decided to reignite. I bought a used portable organ and ordered music books with excitement. This gave me something fun and challenging to look forward to and so completely relieved me of TED consumption. Whatever you're interested in, go for it! It might be learning a new language, swimming, dancing...the sky is the limit. Dip into something you've always wanted to do.

I hope these steps are helpful. I know and understand your struggle. You are my amazing and strong TED peers! Always remember we are more than this chronic illness.

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