It’s sometimes hard for healthy people to understand invisible illnesses

People who aren’t sick with a rare or chronic illness can have a hard time understanding what life is like for those of us who have one. Blood draws, medical treatments, chronic pain, and weakened immune systems are just some of the daily issues we deal with. On top of that, many of our illnesses are invisible, adding another layer of complexity.

Invisible illness is a term that those of us who are chronically ill use a lot. It refers to an illness that’s clearly there, but most people can’t see its physical manifestations. There are no visible injuries, wheelchairs, supplemental oxygen, or other visual signs.

Over the years, I’ve learned that when people can’t see something, they tend to have a harder time understanding it. Doubt can creep in each time they see us, because many of us have learned to mask our pain and other symptoms.

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This sometimes happens when I park in a handicapped parking spot. If I’m not having a particularly painful joint day and I’m not limping, someone might give me the “stink eye” for parking there. I have a placard that hangs in my car, and I’ve even seen people leaning over to inspect it.

I consider all five of my illnesses and most of my comorbidities to be “invisible.” These include immune thrombocytopenia (ITP) and atypical hemolytic uremic syndrome (aHUS), two diseases that affect my immune system. ITP causes my immune system to attack my blood platelets, while aHUS causes my immune system to attack my red blood cells, which can cause blood clots to form in my organs.

Sometimes I wish I had more visual symptoms, which occasionally do occur. With ITP, I can develop abnormal bruising and nosebleeds, but they usually happen only when I’m close to developing an ITP symptom flare.

Having invisible illnesses can cause people to unfairly judge us, including some medical professionals. I’ve encountered healthcare workers who couldn’t believe how sick I was, or the level of pain I had, because I was calmly having a conversation with them.

We shouldn’t have to prove to anyone that we’re sick. Doing so just adds another layer of stress to our already difficult lives.

I try to educate others when the opportunity arises, but it’s usually only a small group of people. I hope that my columns help in that regard, so that more healthy people will understand what those of us who are chronically ill may be going through.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.