8 Suggestions People Offered to ‘Fix’ My Chronic Illness
I’m sure many people out there with a chronic illness have told by others how they can “fix” their condition by doing a certain thing. I can’t imagine being told this if my condition wasn’t an invisible illness!
Below is a list of suggestions I’ve tried over the past few years from friends, family work colleagues and even certain doctors while my condition has been worsening.
I think my main message is try to show that you know your body better than those people. We know how we normally feel, we know what’s wrong, we know our illness, we know our diagnosis and we know what we can do.
By telling us we can “fix it” or that “we’re not doing enough,” people are questioning our strength and condition.
1. Acupuncture: Suggested by my doctor and work colleagues.
This is a funny one for me. The day of the acupuncture I felt dizzy and worn out and couldn’t do much of anything. The next day I felt pretty good — almost normal you might say. But the day after that, I was back to my normal, so going through the acupuncture process is relatively worthless for me.
2. Yoga: Suggested by friends.
This is another one I am not really sure about. When I have a flare, the idea of bending into all different positions and breathing a certain way seems ridiculous and quite dangerous! On my good days, I really enjoy yoga, but it’s definitely not a fix for me. I would like to tell anyone who tells me that yoga could cure my condition and pain to try and hold a headstand against a wall when your hips have been subluxing all day!
3. Positive thinking: Suggested by a lot of online help groups and friends.
I find this a tad offensive. During my day-to-day life, I’m as positive as I can be. I always see the best in situations. Through my flare-ups, I think I’m able to deal with a bad day a lot better than a “normal person.” But when I’m told positive thinking will cure my condition, I think about the diagnosis and tests that prove my body is not functioning properly. No matter how positive I am, I can’t stop my joints dislocating and subluxing. I can’t imagine these same people my near-sightedness will go away through positive thinking!
4. Squat more: Suggested by a physiotherapist.
A physiotherapist suggested my joints were popping out because I had no muscle. I was told to do 30 squats every hour to up my strength. I have a full-time job and other commitments, so this was unrealistic. And it caused a lot of pain — both emotionally and physically! I can look back and laugh, but when a professional tells you that you can cure yourself, you’re willing to try anything. I almost put myself in hospital trying to keep up with his squat suggestions!
5. A vegan diet: Suggested by an orthopedic surgeon.
I actually really enjoyed this one! Dairy and meat apparently can swell joints, so with a condition like mine, it does really help to stop the swelling any way I can. Within a week or so, I could feel the difference after not eating meat or dairy. Plus, I like all the different foods I have tried through this diet. Although it’s not a cure, it was a good piece of advice, and I will always be grateful.
6. Lose weight: Suggested by a doctor.
I was told my pain might have been due to the heavy weight I was putting on my joints. As with the other suggestions, that seems reasonable. I ate smaller portions and managed to lose a good amount of weight. But apart from having to buy a whole new wardrobe, I was still in pain. I feel I must look healthier, but my insides are still hurting and aching.
7. Walk around more: Suggested by co-workers and friends.
Maybe my joints are bad because I don’t move enough. This seemed like a fair point. If you don’t move, your joints might seize up. But when you’re having a flare, dizzy with pain and dislocating and subluxing, being told to walk around is the last thing you want to hear!
8. It’s in your head: Suggested by doctors.
This is the worst one. When I’m feeling particularly bad, I’ll go to the doctor’s office. If the doctor hasn’t read my notes, they’ll ask if I’m depressed or if there is anything in
my life that has upset me.
Two months ago, I was in so much pain I could barely walk. A doctor told me she thought it was in my head due to severe depression, and I believed her. But then I went to the pain clinic for my weekly appointment, and it turned out I had something out of place for days. A staffer there put it back in place was shocked my doctor hadn’t noticed it.
If you’re reading this feel judged, remember you’re strong just by getting through the day. After years of getting upset when people said they had Googled my condition and could “fix” me, I’m learning to say thank you and realize it’s because they care. I use the suggestion to start a conversation to raise awareness about Ehlers-Danlos syndrome. Unfortunately, my illness can’t be cured or “fixed.”
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