Life with Chronic Illness: Rose's Story

Today’s blog post is brought to you by a special guest blogger. Rose, who goes by Photobombshell out in the internet world, is an on-air personality, music curator and writer, professional photographer, and self-care advocate. I had the pleasure of knowing and growing up with Rose back before all of the madness of chronic illness first started and I am honored to have her share her story on my blog.

Hi! I am Rose, and I have Hashimoto's Thyroiditis. My diagnosis came at 24 years old. The pathway to that diagnosis was long, confusing, and challenged all of my beliefs about myself and my sanity. Sometimes I try to think back to when it started, but many signs have always been there. Living in childhood poverty meant that I didn't receive regular medical care, creating the perfect storm for an invisible illness, and leaving me with more questions than answers.

My most clear memories, struggling with body temperature regulation, weight gain, hair loss, fatigue, and joint pain (telltale signs of a thyroid condition), began as a senior in college. I experienced soul-crushing fatigue that often caused me to call out of work and occasionally miss classes. My hair started falling out in clumps. My nails were constantly peeling off. As a full-time student working on my thesis and a cheerleader with three part-time jobs, I chalked all symptoms up to actual fatigue and stress. Guess who still didn't have medical insurance? You guessed it! My condition silently continued to progress.

Three years later, after completing graduate school and starting a full-time job, I felt like I had hit a wall. When my health insurance kicked in after 90 days, I decided it was time to get caught up on all of the medical things I should have been doing all along. I went and got a physical. Did you know you have bloodwork done at physicals? That's when everything started moving. A week later, my doctor requested a follow-up appointment to review my bloodwork. I didn't know what that meant, but I had to return in three months and repeat the bloodwork. By the time I got back three months later, I had explained all of the symptoms I was experiencing. My doctor referred me to a gynecologist, an infectious disease specialist, and ordered an IVP and X-rays taken, but no one could figure it out. It wasn't until I requested paper copies of my blood work that I even knew I was diagnosed with Hypothyroidism (not otherwise specified). After that, I questioned my TSH being out of range in the 60's, why I was never told of my condition and started Synthroid for treatment.

The next two years of my life were spent visiting my general practitioner every six weeks and repeating bloodwork at the same interval. It took that long for my thyroid levels to get in range. Then I found out that I was expecting my first child. I expressed my concerns about treatment during my pregnancy, as thyroid conditions may pose risks to the fetus if treatment is not optimal. For the first time, I was sent to an endocrinologist. That appointment in May of 2012 changed my life.

My endocrinology appointments have always been marked by this feeling of safety, that this doctor knew what I was experiencing was real, and that I would get answers when I asked questions. She examined my thyroid by actually feeling my throat, asked about my symptoms and what I was still struggling with despite medication. I was tested for thyroid antibodies and was diagnosed with Hashimoto's Thyroiditis. I firmly believe that my endocrinologist may have saved my unborn daughter's life. I finally had the treatment I needed, with medication adjustments and education about diet changes, and knew I could sustain my pregnancy.

It's nine years later, thirteen after my initial diagnosis, and most days are now good days. I've learned how to eat, how to work out (or not work out), how to take care of my hair, and that my nails will likely never be strong. I have learned that I have to work harder than the average person to maintain weight and lose weight. I also give myself some credit these days. I now understand that my body is incredible, and even when it is waging war on itself, I can do amazing things (which sometimes look like ordinary things to the untrained eye).

Along this journey, I've tried to educate my loved ones on what chronic illness means and how it affects my life. I have become vocal about patients self-advocating for care and treatment. I share my experience with newly diagnosed friends and followers, validating their experiences and sharing hope. I often hear stories about disbelief, minimization, or denial of the chronically ill person's experience. I think these issues stem from a wide range of misconceptions about Hashimoto's.

Even with the best of intentions, folks without chronic or invisible illness still get it wrong. One of the most upsetting misconceptions is that as a thyroid patient, you take a pill, and you heal. Even with perfect treatment and perfect compliance, I experience symptomatic days, weeks, or even months. The second misconception is that if you have a thyroid condition, you would know it. Your symptoms could be subtle or so commonplace that collectively they are not linked to a chronic condition for many years. The third misconception is that a thyroid ONLY affects your energy levels. While energy levels are one area that is affected, low thyroid hormone can change your body temperature regulation, metabolism, cholesterol, and cardiovascular health. Lastly, and probably the most annoying misconception, are blanket statements about obesity and thyroid conditions. Not all people with obesity have thyroid conditions. Not all people with thyroid conditions struggle with obesity. No one is laughing at those uninformed insensitive statements.

My advice to anyone who loves someone with a chronic illness (thyroid or otherwise) is simple. Be kind. Validate your loved one's experience. Ask how the person would like to be supported. Treat them the same way you always have (if you've always been kind). Give the condition a google if you'd like, do some research, and learn about the experience. Lastly, remember that many with chronic illnesses seem to handle the condition with grace and effortless positivity. Know that behind the scenes, there are days when they are working hard to perform even the simplest of tasks. Just because they carry it well, doesn't mean it isn't heavy.