Why I Wish My Chronic Illness Was More Visible


Living with a chronic illness is hard. Asking for help when you need it is even harder. I’ve asked multiple people for help with my healthcare needs over the years and I don’t always get it. Why? Because I don’t look sick. I have an invisible illness. You can’t see tachycardia. You can’t see low blood pressure. You can’t see brain fog. You can’t see chronic pain, but you can poke at it if you want.

I regularly ask doctors for help. Some try to help me and others don’t. One doctor referred to my illness as “That Postural Thing,” as if it’s no big deal. “That Postural Thing” has destroyed my life and career prospects. It’s the reason I can’t work and it’s the reason I lost my place on my Master’s degree. The majority of doctors act like they don’t even care that my debilitating symptoms leave me incapacitated most days. One doctor even told me that “young people don’t get sick” – therefore, there couldn’t be anything wrong with me. How wrong he was. I found out that I had postural orthostatic tachycardia syndrome (POTS) when I was 23, 18 months after I’d first asked for help with symptoms. Even after my diagnosis, I’ve had to fight to receive adequate treatment from doctors.

In my new life as a person with a disability, I have found that if you don’t fit into someone’s perception of what a disabled person should look like, they can be cruel. If you walk slowly, they will come up behind you and stamp their feet or push you out of the way. I am entitled to use the disabled seats on public transport, but people don’t like this because as a young woman, I don’t fit into their view of what a disabled person should look like. They come up to me and scream in my face or point out the disabled sticker to me as if to say, “You shouldn’t be sitting here.” I could show them how debilitating my illness is by standing up and putting my arms above my head until I keel over. But, I don’t want to and I shouldn’t have to.

I believe that medical professionals should have a greater awareness of conditions like POTS so that patients can receive adequate healthcare immediately, without having to ask for it multiple times. I also believe that better education is required to tackle people’s ignorance and to teach them that not all disabilities are visible. This way, people with invisible conditions would be treated fairly with the respect they deserve.

Getty Image by Rachel_Web_Design


Find this story helpful? Share it with someone you care about.


Related to Postural Orthostatic Tachycardia Syndrome

Woman looking at the river.

5 Things Not to Be Ashamed of If You're Chronically Ill

Prior to becoming physically disabled from postural orthostatic tachycardia syndrome (POTS) and chronic pain, I was very self-sufficient and I loved it. I worked from the age of 15 until it felt as though illness swept the independence out from under me at around 22. I felt like my life had become irreparable as my [...]
A blurred crowd of people in a stadium.

How POTS Made Me Feel Alone in a Crowd of 92,746

One of the more frustrating aspects of all chronic illnesses is not knowing when a bad day will strike. But for me, it’s even worse not knowing which degree of “bad” the bad days will be. It’s like bad days come in coffee sizes; I might try to order tea, but life gives me a [...]
woman taking a photo of two friends posing and smiling

What Photos Won't Show You About My Life With POTS

Pictures often highlight the parts of our lives we want the world to see. However, pictures do not show internal symptoms like headaches, dizziness, fatigue or the struggle to stand up or stay awake. I have POTS (postural orthostatic tachycardia syndrome) and never know how I will feel one day to the next. The symptoms [...]
A photo of the writer holding a flower.

Why My Body Hates the Warmer Months

I hate springtime and summer time. There, I said it. Though honestly, it’s not me that hates the warmer months, it’s my body. See, I have postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS) and the heat makes both of them worse. The warmer the weather, the more my blood vessels dilate and the harder [...]