Now I Understand

I know I wanted people to understand what I was going through with my thyroid eye disease. I couldn't sit alone with my misery. Now that the worst has passed and I am in the stable phase, I am not so single minded. Autoimmune diseases run rampant in my family. As I reflect on my need for understanding during the worst times of Graves' disease and TED, I wonder if I ever understood what my family members were going through with their diseases.

Looking back at my family's history with autoimmune conditions

Rheumatoid arthritis

My mom's sister was diagnosed with rheumatoid arthritis when she was just eight years old. As a child, I never knew my aunt not to be crippled. She was the aunt who held her infant nieces and nephews in her arms with help from other adults to give her strength. Her disease robbed her of an education and countless opportunities.

Rarely did I hear my aunt complain or demand extra attention. She once told me that when she was about seven years old, she was told to walk to an area in the grass to get her picture taken. She said she wondered why the adults did not know that it hurt for her to walk in the grass. Gradually I am sure they learned this, yet, I wonder how well they understood. She was in a family that believed in home remedies as apposed to doctors. 

I hope she had someone who was 100% there for her when she was so young and feeling the pain that slowly crippled every bone in her body. I know how important that is and I hope somebody understood.  

Diabetes

Still as a child, I witnessed an older sister struggling with a health problem and finally being diagnosed with Type 1 diabetes at the age of 10. As I look back I realize that she was really on her own when it came to understanding and managing her diabetes. There were no classes for family at the time to teach us what we needed to know to help my sister. Fortunately for her, she already knew she wanted to be a nurse when she grew up and she was able to tap into that yearning for medical knowledge to help herself.

Reflecting back, I was at a loss and sometimes frustrated and annoyed when I saw my sister going into a diabetic reaction and refusing to eat anything. I "didn't understand" that she was already too confused to listen to commands. Of course, I gradually learned to help my sister and be a second pair of eyes for her on the school bus and in the home. To her credit, as a nurse, my sister held classes for newly diagnosed diabetic patients and their families, teaching them everything they needed to know to understand and manage this illness. It was her mission to give every new patient the understanding they needed.

Sjogren's syndrome

Several years ago, another of my sisters was diagnosed with Sjogren's disease. I think I thought of it as an annoying allergy...dry eyes, dry mouth and hives. No big deal. Drink a lot of water, use eye drops and wear long sleeves and long pants to protect the hives. Was I wrong! It is a big deal! The dry eyes are extreme and can lead to vision problems. The dry mouth can lead to dental problems and the hives are painful and often last for six weeks. Why did I have to walk a mile in my TED shoes to understand her autoimmune disease? I understand now.

Parkinson's disease

The list of autoimmune diseases in my family continues. Sadly, I have a very special cousin, who is struggling with Parkinson's disease. It has already taken so much mobility from her. I am sometimes too anxious to learn about the progress of this disease and her prognosis; but I will. I don't know if I will ever fully understand what my cousin is going through but I want to be there for her and I want to try to understand.

After experiencing thyroid eye disease: Now I understand

My experience with Graves' disease and thyroid eye disease has opened my eyes to those who struggle with autoimmune diseases and other illnesses. My journey has given me the gift of empathy. Now I understand.