When Friends Don't Understand Why Chronic Illness Makes You 'Flaky'

Having a chronic illness is hard. Really hard. There’s no guidebook you get handed in the doctor’s office like, “Hey, congratulations, you have such-and-such, here’s what you should do for everything all the time!” There’s no support group set up for you already there, there’s no magical facility they can send you to that will immediately cure you and there’s not even a guarantee you will get a diagnosis when you first go into the doctor.

I was 16 years old when my pain began, and it took five more years before I would get a diagnosis. Five years spent thinking it must be normal – everyone’s knees swell and hurt after standing for an hour, everyone’s backs hurt so bad they can’t move after a day of sitting in classes, everyone must experience headaches this bad, it’s OK.

When I finally realized it wasn’t normal, I was left thinking it was “all in my head,” that I was exaggerating the pain I was in; what scared me the most into thinking this was my doctor, of all things. At the time I was at a pediatrician who was good at giving shots and curing regular illnesses – not so much at identifying a chronic pain condition, especially in someone so young. So I was told: “It’s just puberty, all girls go through it! Your knees are just growing and they’re pushing and making you hurt.” “Well, you are overweight…” “You’re over-exaggerating!” “Stop being so lazy!” “Why do you sleep all day?”

These were all things I would hear for years. Even after my diagnosis of fibromyalgia, Raynaud’s phenomenon and rheumatoid arthritis, I became accustomed to it and even expected it most days.

But then in 2014, I made it to college. I was attending a wonderful university in Texas and met some wonderful people, even best friends there! I had finally gotten my diagnosis, the reasons for all my pain, exhaustion, insomnia, it was all explained and I could now begin working to take care of myself better. I was feeling good, I was still going out with friends but limiting myself because I could no longer push myself through the pain or exhaustion like I used to. That was probably the first step to me learning how to say “no,” rescheduling plans or staying in bed all day because that was what my body needed. It was incredibly freeing and a good learning experience for me.

My “best friend” at the time, however, did not see it that way. Something changed when I began to become less available and less capable and more focused on my own health. She began to become more confused and bitter towards me, to the point where she decided to bad mouth me and complain to my other best friend. When I heard she was complaining about me, how I never go out, how I’m “exaggerating” my illness, it broke my heart. I did not understand how somebody could be so ignorant and close-minded.

One night, I met with her for coffee just to clear the air and try to explain to her what was going on and why my social habits and willingness to participate had changed. It had nothing to do with her – it was all about my illness and my body. But that didn’t seem to change anything. Despite stating she understood and despite our other best friend in our group also having similar illnesses to mine, my friend seemed to become more set in her idea that I was “faking” and decided I was just a flaky person.

We began to grow apart; she invited me to less and less things, we spoke less and less and she began attacking my choice in a boyfriend. It began to become clear to me that while I had supported her through everything going on in her life – through bad boyfriends, rough breakups, family problems – she could not, or would not, support me in the one aspect of my life I needed the most support in: my physical disabilities.

There were a few discussions and arguments after the coffee meeting, but the damage was done; I had a chronic illness and she refused to be understanding and supportive. Having someone like that who would cut me down anytime I felt bad or make me feel guilty for being sick is not someone I want or need in my life. So I lost a best friend, not because of my diagnosis, but because she did not believe I really was sick and would not support me.

Be careful when choosing who you keep close to you. Will they come over to spend time with you when you can’t go out? Or will they become angry and guilt-trip you for being sick? Will they support you on your hardest days? Or will they disappear until you feel better?

You deserve the best kinds of people in your life. It is OK to cut toxic people out and it is OK to lose friends.

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Thinkstock photo via vestica.