Click here to listen to a reading of this blog:
I’m really pleased to share with you another post from Victoria at The Butterfly Effect.
I think many of you will resonate with her open letter about living with autoimmune thyroid disease Hashimoto’s, below. Please feel free to share this with your friends and family.
Written by Victoria Gasparini
It is okay to not understand what I am going through. It is okay to not fully understand the concept of an autoimmune illness, 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 tall 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.
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.
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 fifty-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.
Thank you for reading.
Diagnosed with Hashimoto’s Disease and Hypothyroidism, Victoria Gasparini explores the reality of living with chronic illness (Hashimoto’s) through her blog, The Butterfly Effect. Victoria seeks to spread awareness of autoimmunity and writes to inspire chronically ill patents to live wholesome lives beyond their health struggles.
What do you wish others knew about your thyroid condition?
If you would like to submit a guest post, whether you’re a thyroid patient, doctor or anyone else, please get in contact.
You, Me and Hypothyroidism: When Someone You Love Has Hypothyroidism, a book for those who know someone with hypothyroidism.
You can click on the hyperlinks in the above post to learn more and see references to information given.
Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes authoring books, writing articles, blogging and speaking on podcasts, as well as being a board member for The American College of Thyroidology and The WEGO Health Patient Leader Advisory Board. Rachel has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Yahoo, MSN, ThyroidChange and many more. She is well-recognised as a useful contributor to the thyroid community and has received multiple awards and recognitions for her work and dedication. She has authored two books: ‘Be Your Own Thyroid Advocate‘ and ‘You, Me and Hypothyroidism‘. Rachel is British, but advocates for thyroid patients on a global scale.