Living With An Invisible Disease (Or Three)

Reading Time: 5 minutes
Art by QinniArt

Hello fellow readers. Today I’d like to talk about a more serious topic with you guys. As you can see from the title, it’s about living with a disease; an invisible one. My earliest memory of there being something wrong with my body was when I started developing hives (rashes) around the age I turned 15. Those were some of the worst years of my life as I had to deal with my body constantly itching every day and looking like a mess. I had no self-confidence at all because of how hideous I would look with those rashes covering my skin. It would go away when I took antihistamines, but the next day they’d appear again, like a plague. There was no cure for it no matter how many doctors I went to see, and on days when it got really bad, I had to get medical intervention. There was once when I woke up in the middle of the night with every inch of my body covered with rashes and I had to be rushed to the ER. Many years of suffering later, I finally went to the hospital for an allergy test and the doctor told me that I might have thyroid problems. 

I went to see an endocrinologist and was diagnosed with Graves’ disease and hyperthyroidism. Hence, the invisible disease part. People with Graves, or hyperthyroidism look perfectly normal on the outside. But from the inside, they are waging a fierce battle with themselves. According to NIDKK, Graves’ disease is an autoimmune disorder that causes hyperthyroidism or overactive thyroid. With this disease, your immune system attacks the thyroid and causes it to make more thyroid hormones than your body needs. 

Symptoms of hyperthyroidism include;

– Feeling hot and sweaty all the time
– A racing heartbeat and palpitations
– Insomnia
– Anxious and angry at every little thing
– Hand tremors
– Brittle hair
– Rapid weight loss
– An enlarged thyroid gland
– Etc

After I was diagnosed with this disease, I started taking medication for it and my hives finally stopped. However, being diagnosed with hyperthyroidism changed my life forever. Firstly, I had to undergo strict dietary restrictions (especially when my thyroid levels are high) such as no seafood, seaweed, beans, nuts, dairy, soy, and other foods with high iodine content. That in itself is half of the food chain so my food choices were severely limited. Imagine moving to a country like Japan; a haven for seafood and seaweed galore, but you can’t eat any of it. 

Secondly, I can’t be stressed out. At all. Stress is the leading trigger for me and every time I’m stressed my hyperthyroidism gets worse. There were two times in the last few years when my levels shot up sky high, the most recent being last October. At the time, I was contemplating moving back to Malaysia because I was feeling stuck after almost 4 years in Japan. All that thinking made me really stressed out and my heart started racing at 110bpm even when I was lying down in my bed at night. After a week of that, I finally realized something was wrong and went to the hospital. The doctor said I had a relapse and prescribed me 5 different pills to take per day. Now, two weeks before that my levels were almost normal and I had been taking only one pill every other day for the past year. So imagine my shock when I had to start taking 5 pills every day. It was also the worst I’ve ever felt in my life. I couldn’t exercise because my heart rate would shoot up to 190bpm if I tried, I was tired and cranky the whole time, I couldn’t sleep, my hair was falling out like crazy, I lost 2 kilos in a week, my thyroid gland was bulging so bad I looked like a frog the entire time. Even though I was suffering so much, none of my friends noticed my suffering. Instead, all of them complimented me on my weight loss. “Wow, your style is so good lately! I’m jealous!” my friends would say (Style in Japanese refers to body shape, and not your actual fashion sense). “I’m not okay! I’m sick!” I screamed in my mind. But all I could do was smile and say thanks in reply.

Third, there is no cure for hyperthyroidism. You can get your levels down by trying to live as healthy a lifestyle as possible, and if you’re lucky you will end up in remission… Until it strikes again. Unluckily for me, I have never once been in remission the past 7 years I’ve been diagnosed with this disease. There was never a day when I could finally stop taking my pills. And I’ve already given up any hope of ever being in remission. There is one way you can stop being hyper, which is to either take radioactive iodine to kill your thyroid or remove it by surgery. However, if you choose that option, you will end up being hypo instead, and still have to take pills your entire life. Being hypo did not sound appealing to me either, not with its symptoms such as weight gain and depression.

Anyway, after being free from hives for many years, I thought that was the end of it. So long. Farewell. Sayonara. Goodbye, ugly me. I would only occasionally get a few tiny patches when my hormones changed, aka during that time of the month. However, when I came back to Malaysia, my hives returned in its full fury. And now I feel like shit again.  The worst part is, I have no idea what is wrong. Even my skin doctor does not know what is wrong. All he can do is keep increasing my antihistamine dosages every time I see him (I take 4 per day now), but the hives still continue to appear. And my thyroid levels have been going down so I don’t know what is wrong either. I’m just really tired. Tired of living with this disease. Tired of having to take medication every day. Tired of… life. It’d be nice if I was a normal person.

On the topic of stress, I also grind my teeth in my sleep when I’m stressed, leading to temporomandibular joint dysfunction aka TMD problems. It basically means I have jaw problems, and whenever I eat food that is hard or chewy my jaw starts to hurt which also ends up giving me a massive migraine. By the way, TMD isn’t fixable either. I’ve visited 5 different dentists and all of them told me that there is no cure. All they can do is give me a mouth guard to wear at night to lessen the grinding problem. Isn’t that great? I’m not even 30 yet but I already have a slew of health problems. Imagine what will happen when I turn 80 :)))

Anyway, there isn’t really any point to this blog post. I’ve just been feeling upset about my situation and wanted to rant. Lastly, please be kind to people as there are many others like me out there, suffering from an invisible illness on the inside while looking perfectly normal. This goes for those suffering from mental disorders as well. Being told “You look fine” to someone who is grappling with an illness on the inside diminishes their struggles and make them feel as if their problems are no big deal. Let’s be kinder and more understanding of the plight of others.

What about you? Are you suffering from problems that may not be known by other people too? If you need a listening ear, just drop me an anonymous comment. No judgments, I promise.

Did you enjoy this post? Help support me on Ko-Fi:

Please follow and like us:

2 thoughts on “Living With An Invisible Disease (Or Three)”

  1. Hello miss Hermes,

    First let me say that I find it very brave of you to talk about your personal issues on such an open platform. Second I would like to say ‘Hope you get well soon’, but reading the above I know that will be very unlikely, which makes me sad.
    I do hope that you somehow will be able to manage all these unfortunate issues life has thrown at you.
    I wish I lived nearer and somehow managed to be one of your friends, so would I be able to support you. But this is not the case and I can only hope that friends, like Cheryl, are able to be your support in this difficult time.

    I myself have no serious health problems, apart from a typical Western disease, massive overweight. So I probably should count myself lucky that up until now , even though I am obese, have had no serious effects from it.

    Well that was my two cents worth.

Leave a Comment

Your email address will not be published. Required fields are marked *