It is okay to not understand what I am going through. It is okay to not fully understand the concept of an autoimmune disease, heck, even my doctor has a hard time understanding. I have come to accept that this is my normal, at least for now. This is not something that you understand, and I have accepted that. If you care to keep reading, here is what I would like you to know.
When I say I am too tired to go out, I don’t mean I didn’t sleep well last night or that I do not want to see you. My tired is a tired that sleep cannot fix. It’s a tired that feels like gravity is much too heavy some days. It is a tired that feels as though I haven’t rested in weeks.
When I say I cannot eat something I am not looking for attention nor am I on a diet. I cannot have a “cheat” meal because I am not dieting, I am sick. Foods that your body can digest, my body sends out attack signals on my organs and tissues when eaten. Having “just a little” of something I cannot eat will damage my body and make me more sick.
When I say I am sick I don’t mean I have a cold or that I can be cured with some Advil and a glass of water. In fact, I cannot be cured at all. My illness doesn’t go away, its symptoms may lessen with lifestyle changes and treatment but it is always there.
When I say I cannot remember something I don’t mean I wasn’t listening. My brain becomes foggy and I sometimes lose my focus. I make wrong turns, forget what time my shift starts and often lose track of conversation.
When I talk about my illness I am not looking for your sympathy, advice or attention. I am simply spreading an awareness of an illness that is all too common in the world today, and yet still incomprehensible to most.
When I say I am not feeling well, I am not comparing my disease to anyone else's. I am not saying that I have it worse than anyone else. I am saying that I am not well and do not appreciate being compared to other people and their illnesses.
When I say I am struggling I mean that I am painfully aware that my illness means by body is betraying me. I have to deal with the fact that no matter how much I love and support my body, it will always be a constant battle to feel normal.
My autoimmune disease makes simple life tasks a little bit harder. It makes me overly anxious and sometimes depressed. It sometimes makes me emotional without reason, and causes me to become irritable and annoyed. My autoimmune disease causes my hair to fall out of my head excessively, my skin to be very dry, sensitive and splotchy. Sometimes my autoimmune disease causes rashes and hives and very intense muscle pains throughout my body. My illness makes handling extreme heat very difficult, and dealing with extreme cold even tougher. My autoimmune disease effects every cell in my body, and messes with my hormone production. It makes it very hard to go to social events that involve food because my body reacts to nearly everything in the standard American diet. My illness makes some days feel very long, and simple tasks hard to complete. My illness can appear invisible, I may look fine, but I don't always feel fine. My autoimmune disease means that sometimes I have to say no even if it offends you. Unless you also suffer from an autoimmune disease, you cannot possibly understand what it is like.
I am writing this letter on behalf of people who have no idea what is wrong with them, for people who are ignored by their doctors, friends and family. I am writing for me and for the 50 million autoimmune sufferers in America, and for the sixty percent that suffer but remain undiagnosed. You may not understand my autoimmune disease but with these statistics rising rapidly, you might need to one day.
To my family and friends, or to anyone reading this, I am not asking you to understand what living with an autoimmune disease is like, I am asking you to understand that my life is different because of it.
Everything that has happened in your life has led you here. Thank you for reading!
Edit to add: It has been 3 years since I originally posted this letter, and much has changed. Though my illness remains a constant factor in my life, it does not run my life. I am in a place where I can finally say my autoimmune disease is no longer in control. I hope that if this letter resonates with you, that you realize there are better days ahead. Take care of yourself.
Diagnosed with Hashimoto’s Disease and Hypothyroidism, Victoria explores the reality of living with chronic illness through her blog, The Butterfly Effect.
Victoria seeks to spread awareness of autoimmunity and to inspire chronically ill patients to live wholesome lives beyond their health struggles. Victoria begins her studies to be a naturopathic doctor this coming Fall, with the goal to help others overcome the challenges that autoimmunity presents, and to find everlasting health and prosperity.