When chronic illness makes being a good friend harder
It's often difficult to explain invisible illness to the healthy people I care about
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Being chronically ill with multiple rare diseases has changed my life in unimaginable ways. In addition to my health and physical abilities, my day-to-day life, relationships, and even friendships have been affected — not only in terms of how others react to me, but also how I approach friendship in general.
Most of my life was shaped by the challenges of living with lupus and hypermobile Ehlers-Danlos syndrome. Then, when I was well into my 30s, I developed other rare conditions. In 2018, I was diagnosed with immune thrombocytopenia (ITP), a rare autoimmune disorder marked by a loss of platelets, and two years later, with atypical hemolytic uremic syndrome, a rare disease that causes blood clots. It nearly killed me.
When I was diagnosed with ITP, I was a newly divorced single mom raising two young toddlers while running a preschool. I had a very active life. But then I started to feel consistently worn down and physically weaker, and had a hard time focusing. I just didn’t feel like myself.
Learning to navigate life with these diseases was time-consuming. My previously “normal” life took a back seat to my care. It was difficult to acclimate to the changes that had been thrust upon me.
Battling social anxiety in addition to rare diseases
Unfortunately, I think it’s common for people with serious health issues to lose friends after a diagnosis. Many healthy people don’t know what to say or how to support a chronically ill friend.
In my case, though, I feel like I’m the one who’s been a bad friend. I have a hard time picking up the phone and calling anyone now. Replying to messages causes me anxiety. I don’t like making plans, either, because I fear I won’t feel well and will have to cancel. If I do hang out with friends, I get tired quickly and usually have to leave early.
I miss seeing my friends. But the crippling and irrational social anxiety that has suddenly gripped me is so hard to fight. I often don’t know how to work through it, especially when I don’t feel well.
I don’t know how to explain all of this to my friends. I have invisible illnesses, so there aren’t glaring signs that I’m chronically ill. I may look healthy on any given day, which makes it hard for people to see that I don’t feel well or might be struggling.
My symptoms are very unpredictable. I can have an active day of running errands, hanging out with family, or going out to dinner, and the next day, I’ll barely be able to walk because I overdid it. Healthy people might think, “You were fine yesterday, so what do you mean you can’t walk today?”
It’s daunting to have to explain myself when this happens, so I try to avoid it. The result is less communication with friends and family and the anxiety I mentioned above.
Of course, I still love my friends. Knowing what my issues are is half the battle, so I’m actively trying to address this new antisocial behavior. It’s an ongoing process, but I do want to be a better, more consistent friend for those who care about me.
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.
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