Real Talk: Living With Chronic Illness

I can’t remember the last time I felt well. For as long as I can remember, my life has been dictated by an undercurrent of aches, exhaustion, counting pills, and feelings of defeat. For over half of my life I’ve been living with a chronic illness, and only in recent years have I started to take active steps to keep it from controlling my life. It’s a whole different kind of sick.

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Chronic illness can take its form in many ways, and more people than you know suffer from one. It may go completely unnoticed when you look at a person, but that doesn’t diminish how debilitating it can be. Chronic illness is defined as “a long-lasting condition that can be controlled but not cured.” When I was diagnosed with Graves’ disease at 13, I couldn’t possibly understand what it would mean to need to take medication every day for the rest of my life.

Sometimes, I still don’t understand it. I still don’t understand why I exhibit sometimes crippling symptoms despite my numbers being “within range.” I still don’t understand why my body turns against itself. I still don’t understand how something as small as the thyroid can impact so many aspects of my life. The very definition of an auto-immune disorder is a disease where “the body’s immune system attacks and destroys healthy body tissue by mistake.” And that’s exactly what my disease is.

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When I was diagnosed, I was put on medication to control my symptoms. I gained some weight, I mellowed out a bit. Before the diagnosis I was practically flunking out of 7th grade. They thought I had ADHD. But it didn’t go away even after the medication began. I couldn’t pay attention in class. I was hyperactive. My heart constantly felt like it was going to beat out of my chest. When I was 15, and again at 16, I received radioactive iodine treatment to effectively “kill” my thyroid. My hair started to fall out. I gained more weight. I became sluggish. Success: I had officially transitioned to hypo. This is how we define “controlling” this illness.

My entire life revolves around trying to feel like a “normal” person. Every day is a struggle to feel well. In high school and university, I piled on school work, part time jobs and extracurricular activities to prove to myself and others that I could do as much as anyone else. The thing is that until I became very noticeably ill, no one except my family knew about my disease. It was an exercise in proving to myself that there was nothing wrong with me. The worst part about auto-immune diseases is that because every body is different, everyone responds to treatment and triggers in varying ways. I’ve spent a decade trying to figure out what will work for me.

When I finished my graduate degree in 2012, everything caught up to me. Years of academic stress had caused severed adrenal fatigue and serious depression. I could barely get out of bed to go to work. I was constantly sick. I gained more weight. I was listless and unmotivated. When I went to see an endocrinologist, it turned out my thyroid levels had plummeted. At 25, I will never forget my doctor saying, “I don’t even know how you get yourself out of bed in the morning. You’re functioning better than a lot of normal people.”

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It’s hard to make it through your day-to-day when it feels like your body is actively working against you. Sometimes no amount of sleep, eating well, or exercise can combat the overwhelming need to take a nap. Sometimes it feels better to give up, if only for a day or two. Few people realize that your thyroid controls so much of your body. It’s a central part of your entire system running normally. There’s that word again.

When I became severely ill in 2012, I knew I had to do something. After struggling with my symptoms for nearly a decade, I decided to open up to my closest friends, and to my employer. I explained the things I needed. I explained why sometimes I can’t stay out as late, or why I cancel plans because I literally hurt all over. The relief of sharing that, alongside the proper dosage of medication, has seen me slowly reigning things in. That was a turning point for me, where I finally felt empowered enough to stop letting thyroid disease control my life.

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In the past two years, I’ve become more conscious of how I treat my body, and I’ve recruited some actual help for finding a roadway to recovery. I’m learning to define what controlling the disease means. For me, it means no longer allowing it to control me. I’ve started seeing a personal trainer who has helped me develop an exercise plan that doesn’t leave me prone to a fatigue relapse (auto-immune diseases go hand-in-hand with chronic fatigue); I’ve learned how to properly take my medications (because surprise, they interact with all the things); I’ve discovered how important regular sleep/wake patterns are for my brain; and I’ve learned that to function well, I needed to change certain things about my lifestyle.

I’ve learned to more-or-less live without crazy late nights because I know they leave me craving bedrest for a week; I’ve learned that caffeine and alcohol seriously mess up my body’s rhythm; and I’ve learned that scheduling my life is the most effective way to maintain a healthy balance and feel good. This is my kind of control. I’m dictating what makes me feel better. While every day isn’t going to feel like a win, I’m finally feeling like there are more wins than losses.

You can read more about my road to recovery on my new personal blog, Past Decade.

 

 

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Comments

  1. Jeryl says:

    I also have an autoimmune disease and sympathise and empathise with all you’ve written. So much is attitude and doing what is best for your body.
    Ironically, Having spent years trying to lose weight I’ve also had to deal with steroid induced weight gain, and of course fatigue doesn’t help!
    Adjust to this ‘new normal’ and live a good life.