We need to break the social stigma of chronic invisible illness.

Chronic invisible illness can be a major pain in the butt, but some of the hardest parts of having such a condition is the look we get when we admit that our health is poor when we look outwardly healthy. You know what I’m talking about, the furrowed eyebrows, look of shock, the occasional narrowing of the eyes.

tenor It’s so awkward to get that response, so most of the time I avoid bringing it up in conversation if I can help it. Unfortunately, sometimes I have no choice. With my condition (Panhypopituitarism), there are a plethora of complications, and some of them can be life-threatening. Because of this, I occasionally have to let people know about my limitations and risks. I’ve had to tell complete strangers about the life-saving steroid shot in my purse, and there have been a few occasions when I have had to explain my health conditions to yoga instructors and people working in the gym, on those rare days when I am feeling well enough to go work out.

I am so lucky to have yoga instructors who are very understanding and nonjudgmental, but I STILL get the feeling that I should be ashamed for being honest about my body. That might sound ridiculous to some, but let me explain. On top of not looking sick outwardly, I have a looooong list of complications that make me sound like a complete hypochondriac when I say them out loud. For example, I had a new yoga instructor last week. She is amazing and kind, and listened to me while I explained why I might forego certain poses, but as I said them aloud, I felt embarrassed.

I explained my vertigo, what causes it, and what I might do in class to avoid exacerbating it. When she asked why I experience vertigo, I gave her the short answer- blood pressure- which is only half true. The main cause of my vertigo is my hormonal imbalances and deficiencies. I am always afraid of getting into that because it usually leads to some really pitiful stares and a conversation that in all honesty makes me feel like someone who is seeking attention when that is not my intention at all. So, blood pressure was an easy dodge.

Eventually, I had to mention to her that I have the diagnosis of osteoporosis as well, which is extremely unusual for someone my age, but DEXA scans and careful evaluation by my doctors has proven the diagnosis. She didn’t ask me about it, and I am certain she was not judging me at all, but I could not help but wonder if she or my yoga classmates within earshot thought I was lying or self-diagnosing. Even though I knew that class was a safe space where I could likely talk about all of my health issues and be met with complete understanding, I avoided discussing it further. Something inside me was making me feel uneasy and afraid of sharing too much about it. I’ve been judged by people in the past, and I don’t want to go through that again. I was so worried about talking too much about my health that I completely forgot to tell her about my adrenal insufficiency, which is the life-threatening part of my diagnosis of Panhypopituitarism. I didn’t realize that until I had already left the class.

It’s so frustrating to me that there is such a stigma against admitting health conditions that we have. It’s almost like there is an innate aversion to those of us who are “defective”. This ablest mindset makes life even harder for those of us who are already struggling to get through the day. The most heartbreaking part is, there are many other countries around the world where there is even more shame and pressure put on people with chronic illness to keep quiet about it. Parents will abandon their children, some people can never find a romantic partner. Being unable to have children is considered a curse, or even a punishment from their gods.

I have spoken with someone living in another country who has my same diagnosis. A few years ago, his fiancee was actually the first one to contact me. He had opened up to her about his condition, and she was looking for help for him. She had come across some of my Panhypopituitarism videos on YouTube and decided to reach out to me via Facebook messenger. She expressed concerns that he might not be able to get her pregnant, and she was afraid that they would have to call off the wedding because her parents wanted her to have children so badly. She explained to me that in her country, people just did not talk openly about their health like this, so she was grateful that his condition was not detectable by just looking at him. She told me that they were keeping his diagnosis a secret so he wouldn’t be ostracized, and she asked me for advice on how they might be able to have children. I explained to her that there were fertility treatments that he could take, and I wished them both luck. We only spoke briefly, but I never forgot our conversation, and it made me thankful that even though admitting I have my diagnosis can make me feel uncomfortable, I am not ostracized for having it.

Earlier this year, I was contacted by the man whose fiancee had spoken with me. He was able to have his fertility treatments, and now he and his wife have a beautiful little girl and another baby on the way. He told me that even though it is disheartening that he can not be open about his health, he is happy to have his family. I am so glad he got in touch and told me how he and his family are doing, but I hate that he has to keep his health condition a secret. I know how much panhypopituitarism holds me back and threatens my health at times. It bothers me so much to know that he doesn’t have the luxury of being able to acknowledge that his muscles are weak because of AGHD, or that his extreme fatigue is due to adrenal insufficiency.

Growing up, I was not aware of what was causing these symptoms, and I was led to believe that I was just lazy. I wonder if he thinks those same things about himself even now as an adult. We didn’t talk much, and I wouldn’t even know how to explain this with our language barrier. I want to remind him that is’t not his fault, and there is no divine punishment from a vengeful god. It’s the luck of the draw, and we both got the short stick.

Even though I acknowledge that compared to some other parts of the world, my situation is much better, I still resent the ablest judgement that makes me feel like I should hide my diagnoses in shame. I wish more people would be as understanding and kind as my yoga instructors when someone opens up about their health conditions. I wish some people would think before making comments or asking questions that can crush someone dealing with the frustrations of their limitations. The whole reason I decided to start blogging about this openly was to make stories like my own known to people who might not even consider such complications can exist.

We can build a more compassionate, understanding world. We just need to learn to fight through these feelings of shame and awkwardness. I’m still looking for that balance myself between honesty and coming across as complaining. There are some people who can never understand the struggle of living with chronic invisible illness, but if we can all tell our stories shamelessly, that ablest mindset might eventually fizzle out of society entirely, and maybe that acceptance and understanding will reach other countries where the stigma is so great people must keep it a secret.

I am not perfect, and I still struggle to find the courage to be open and honest about my health, but I am going to try go get better about it.

Who’s with me?


Featured image is a free-to-use stock photo

UPDATE (7/7/2020)
At the time that I wrote this article, I had been diagnosed with osteoporosis by the endocrinologist I had been seeing. My current endocrinologist has reassessed those tests and walked back that diagnosis, which is a relief! I just wanted to make sure I took note of that. 🙂

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