Coping with an Invisible Illness
Last updated: August 2023
"I am going to dress up and hide my illness!" That is what I told myself as a pre-teen, because fitting in was so important to me. No one could know that I had an illness because I did not want to be treated differently, and I was determined to not let that happen.
It was not until my senior year when I had to undergo surgery to get a pacemaker that my classmates and teachers found out about my illness, and that I had heart disease. To my surprise, no one treated me differently, or made me feel out of place. My classmates were extremely supportive, and even gave me pre-get-well gifts, some I still have to this day as a reminder.
My experience living with an invisible illness
Going through life having an invisible illness worked for me, and against me at times. The most important way that worked for me was that no one knew unless I told them. And it worked against me when there were things I just could not do and when I really did not fit in during certain situations that others expected me to succeed in.
I would like to shed some light on what is an invisible illness and give some examples.
An invisible illness is a medical condition that is not outwardly visible to most people, including doctors. There are many different invisible illnesses, including heart disease.1
An interaction with a health care professional
I can remember a time checking in at the hospital and there was a nurse looking at my chart. The more she looked, the more confused she got. She looked at me again, and again at the chart. Boldly asking, "is this really you?!" I began to look confused as to why she asked that. She went on to say, "The person sitting in front of me does not match the person on the screen. You look healthy, but on the screen you are very sick and have been through a lot." At that moment I realized that my invisible illness did not work for me in a positive way.
Why you ask?
I felt helpless at that moment because I thought I was safe. What I hid for so long confronted me, and this time I did not tell them, they had the right to invade my privacy. I just did not understand her saying that to me, not knowing what state of mind I was in, or how I was coping with an invisible illness. But how would she know? Maybe she did not understand how I looked beautiful on the outside, but my heart was so weak and ill. At times I would look in the mirror and wonder to myself.
That alone was a lot to marinate on and took some time to get used to.
Have you ever felt like your doctor minimized your symptoms (saying "it’s normal" or "it's nothing")?
Other people's reactions
Many years of having hypertrophic cardiomyopathy and heart failure caused many days of fatigue. When it came to cleaning, cooking, or even grocery shopping, none of this was easy. Some people looked at it as laziness. When I would drive the shopping cart at the store, I would get so many looks of confusion as to why I was in the cart. Workers would sometimes ask.
What has your experience been coping with an invisible illness like heart failure?
Living with an illness, whether it be invisible or not, is challenging. I have learned we have to cope with it no matter which it is and to try to make the best of it even in the hard times.
Have you had similar experiences? What are some ways you cope with having an invisible illness? Share with us in the comments below.
Have you experienced shortness of breath in the last week?