Tips For Staying Connected While Dealing With TED

Our need for staying connected to other human beings, and a strong social support network, is a must for good health, just like nourishing food. The ups and downs of a chronic illness such as thyroid eye disease require us to bravely reveal our vulnerabilities and find others whom we can rely on for help and support. But there are so many reasons some of us have found it easier to isolate. Our road to getting a diagnosis may have been long. During that time we have so many changing eye symptoms that interfere with our daily lives, but we have no diagnosis. With no diagnosis, we can start to hide our complaints like a guilty secret. Secrets in themselves can lead to isolation.

Family members and close friends are impacted by our chronic illness, too. They can become strained around our ongoing health struggles. Not our fault; not their fault. As much as I didn't know how to relate to the new me, family and friends didn't know how to relate to the new me either. What a mix of unknowns; increasing symptoms, no diagnosis, and new family dynamics! For many of us, it just seems easier to isolate. Once diagnosed, we also may have had to change doctors to get the healthcare team we need and deserve. We've been dealing with symptoms of Graves' disease or Hashimoto's disease and thyroid eye disease (TED). It can be all-consuming...why not isolate.

I applaud any of my TED Peers who have not isolated at all. I know there are some of you out there. How did you stay above the fray, my superheroes? Do share! I tried...I didn't go down without a fight. But there were days when that comfy corner of isolation beckoned me in. I snuggled in for a while knowing that I didn't belong there. I knew if I stayed, even I would get sick of myself. Gradually I put together a plan of how to keep and nurture the social connections so important to my mental and physical health. I hope this will help any of you struggling to stay connected socially as you deal with a disease that may already be robbing you of so much.

Tips for staying connected while having thyroid eye disease

KNOWLEDGE IS POWER!

Through my healthcare team and books on Graves' disease and thyroid eye disease, I was determined to learn and understand everything I needed to know about my condition. I forced myself to ask the "stupid" questions during my doctor visits. After all, autoimmune diseases are forever, so if these are my forevers, I need to know how best to manage them! Being proactive about our disease will take us out of that corner of isolation. The better you understand your illness, the better you will know how to have some helpful conversations with those close to you who really care.

Talk to a TED specialist about an ACTION PLAN

There are so many unknowns while our eyes are in the active phase. How long will this phase last? What will my eyes look like after all the damage is done? Will my vision be impaired? The list goes on. Because our bodies react differently to this disease and the timeline of the active phase varies, our doctors cannot give us definite answers. The active phase of TED is self-limiting, which means it will run its course and calm down. Although it could be active for six months to two plus years, it will calm down. Understanding this, I was able to talk to my doctor about an action plan for when my eyes had stabilized. My plan was getting approved and going through the Tepezza infusions and then surgeries to repair my damaged eyes. Knowing I had a plan to achieve normal looking eyes gave me more tolerance of my eye symptoms and most of all it gave me HOPE! I think not having any hope can keep us in that corner of isolation.

Join a network

Join a network such as Thyroideyedisease.net. In my circle of family and friends there was nobody familiar with Graves' disease or thyroid eye disease. As whiny as it sounds, I needed to commiserate with others going through this awful stuff. Why would we not complain about bulging eyes, retracted eyelids, sun and light sensitivity and double vision?! I learned it is ok to commiserate as long as we do not get stuck there. Go ahead TED PEEPS! Get it out! Complain! This is some scary stuff! Thyroideyedisease.net is a safe place.

RESPECT YOURSELF

I had to learn to continue to respect myself. This meant changing from one TED specialist to another who respected and heard me. It also meant listening to my body and eyes. Somedays I was not able to do my normal activities. When we take care of ourselves we stay ahead of the burn out and we are more able to enjoy our family and friends.

Educate people about TED in social situations

When my eyes were in that shocking wide eyed stare, it was difficult for me as well as others to have face-to-face conversations.  I learned to preempt our time together with a brief explanation of my eye condition and assured them that I was not staring at them but I had no control of the scary stare. This put them and me at ease. Once I figured this out I felt more comfortable in social situations.

Acceptance

This was a tough one for me. I am so impatient when I have an action plan to move forward. My active phase went on for well over two years. There were days that I did not want to accept how I felt. I yearned to be on the other side of TED, but I wasn't, and I had to accept what I could not control. Accepting that meant I took care of myself. It meant not pushing beyond what was reasonable for my burning eyes. Thyroid eye disease picks the timeline, we do not. You can accept this and still know that YOUR EYES WILL GET BETTER. Until then, take good care of yourself.

Managing TED and staying connected

I hope these tips help all of my TED Warriors to stay connected with your people. Our connection to other people is fundamental to our health. Take the time to nurture your relationships with your children, your significant other, your extended family, your good friends. You need them and they need you as well.

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