living with an autoimmune disease
Health and Wellness

What It Is Like Living With An Autoimmune Disease

Two years ago I finally got my diagnosis. It has been two years living with the knowledge of an autoimmune disease and here is what my experience has been.

Taylor Sipos

What Is My Disease?

So two years ago I was diagnosed with Hashimoto's Disease. Which I am sure almost no one knows what it is unless you or a close friend/family member has it or thyroid problems. Basically, my cells have decided that my thyroid is the enemy which basically causes my thyroid to leak hormones that my body needs to create energy causing me to be overly tired, struggle with weight, and loads of other things that can be explained by the disease.

Prior To My Diagnoses

Why is this a big problem? Well basically most of my high school career I was depressed, tired, and honestly felt like I was underwater walking through the days struggling to keep up. The weirder part was that since this disease is basically life long and since I had been living with it my whole life I thought the tired was normal. For example, there is a certain number that should be in between .2-.4 and prior to my diagnosis, my number was at a 90. My doctor who coincidently also has my disease is quoted saying, "I don't know how you have been getting out of bed."

Well, I didn't really know either. But I did get out of bed and I still do. In fact, in high school, I was aggressively active to the point where I am sure I thought the exhaustion was due to that. Doing school volleyball, club volleyball, and sand volleyball year round, extra training with an Ironman, National Honor Society, volunteering, coaching, theater, city youth advisory board, a couple of different extracurricular clubs, and honors and advanced placement courses, I guess you could say that that was a lot.

However much I participated in I was always tired regardless of how much I slept, I was exhausted. The funny thing about always being exhausted is it leads to depression. My bed was as much a sanctuary as it was a prison of the mind. Have you ever put a filter over a photo, of course, you have it is 2019, it is much like putting a filter over yourself, a translucent one walking through your day without a true sense of self. It only gets worse the less and less energy your body is making.

No matter how much you sleep it doesn't help and your mind does crazy things with a lack of energy. Before my diagnosis, I don't think I really was awake in the sense that most people can understand, "Hey, I am an alive active member of society." I don't mean to say that poor pitiful me or look at how much I accomplished with such a hindrance. I mean without my diagnosis eventually, it is an actuality that I would die slowly and grow to feel worse and worse until the bitter end.


My family has always had a series of health conditions and at the top of the list is thyroid issues which, include thyroid cancer, Graves disease and also now Hashimoto's. Yet with such a history on both sides of the family tree, none of my doctors saw fit to really check my thyroid.

I can't fault all of them as my disease is mostly found in older women and at eighteen that should have been an indicator that all was fine in the thyroid department. So finally the tired and depressive state that I was in got to be too much and my current doctor didn't seem to find it as problematic as my mother so I went to her new doctor who was according to her "awesome."

I didn't have much faith in it but I went. First thirty minutes was just the two of us talking about my life, what I liked and was up to, about her life, and then about my answers to patient history. She insisted we check my thyroid given my history and voiced based on touch she was worried it could be Hashimoto's related. Sure enough two weeks later a fresh nineteen years old found out she had a life long incurable (but treatable my doctor stressed) disease.

Post Diagnosis

I wish that I had gone to this doctor while I was still in high school. I just imagine what my experience would have been after the miracle pill was introduced. The miracle pill is a lifelong everyday pill that will need to be adjusted throughout my life as my thyroid slowly dies. Scary right learning that at nineteen a little green pill will be the difference of life and death at some point.

I mean most of us are worried about finals, careers, and graduating college not living or dying. I didn't process it well and as most anxiety-ridden youth I decided to WebMD my disease and got thoroughly freaked. It took a while to unlearn all the myths and scare tactics that the web holds. It is much better to learn from your doctor who one has a medical degree and two also has your disease and has been functioning very well in her life.

Eventually, I learned it's scary but as long as I am responsible and honest I will be just fine. I have an incurable autoimmune disease sure, but it is treatable. The tricky part was the first week on the pill. Finally, I felt awake, until I didn't. Then the next bump up happened, the same rollercoaster, the next bump and finally success. I am awake. I am an alive member of society. I am breathing. I am not wading through the water attempting to run.

There is no need for the filter. Sure I know that eventually that will change and I will need to be on my body. I have to listen to my body and lucky for me I am learning how to tell what she needs. Post diagnosis I am thriving and finally feeling adventurous and bold. I live with an autoimmune disease which yes, sounds very scary but I am living with it. So thanks for your concern, yeah it sucks sometimes, but everyone please remember I am alive and well regardless of my weird body quirks.

Hopefully, those of you out there with my disease or maybe with an autoimmune disease of any kind can relate to my experience. Maybe if you are like me feeling really run down instead of just adjusting to it or thinking it is a regular part of the teen/young adult experience you will seek out a doctor consult just in case because you will never know how much you can thrive until you are finally, awake.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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