When you first start experiencing symptoms of an illness, or when you first get a diagnosis, the learning process officially begins. There’s no handbook for living with a chronic illness, and considering how little understanding there is among the general population and even many doctors about the effects of being chronically sick, it’s understandable if you’ve done (or not done) some things to deal with your illness that you now regret.
We asked our Mighty community to share a mistake they made when they first noticed chronic illness symptoms and what they learned from it. If you have done these things, too, it’s OK — you’re not alone. We’re all in this together and learning how to navigate this chronically ill life.
Here’s what the community told us:
1. “My mistakes are many… my first is I try to push through because ‘someone else has it worse and they can do all these things I can’t. Maybe I’m just being a baby.’ Then I push too hard and I get worse. I can be down for a month at the least.”
2. “I kept fighting to return to ‘normal.’ I wish I could go back and tell myself it’s OK to grieve the life you lost, but it’s not all right to use your past to undermine the life you have now. Sure I miss hiking and school, but the parts of me that like nature and learning haven’t been taken from me. I don’t have to tie my identity to past capabilities. It is possible to find a balance between my interests and new physical limitations.”
3. “I made the mistake especially with physical therapy of living by the motto of ‘no pain no gain.’ This would always make things worse, sometimes leaving me bedridden for days. My husband mentioned it to my physical therapist and she broke down why that motto is BS and from then on would constantly remind me not to overdo things.”
4. “When I was first diagnosed with Crohn’s disease I listened to what everyone said I should be feeling instead of listening to my own body.”
5. “Trying to ‘fix’ it. I didn’t accept that this was a new reality for me. With hard work and determination, anything can be fixed, right?! What I needed was some counseling or a support group to process the massive changes my illness has made to my daily life and my plans for the future. What I did was waste money, time, and effort pursuing anything that might help.”
6. “When I first became chronically ill with postural orthostatic tachycardia syndrome I made the mistake of withdrawing myself from everything. My only safe place was my bedroom. I rarely left the house. And because of that, I became agoraphobic. Also, I tried to keep my emotions and feelings to myself so I wouldn’t be a mental burden to others. I would later come to find that doing so only made me sicker.”
7. “When I was diagnosed with chronic migraine and chronic tension headache, every time I went to the doctor I hoped for a miracle. A pill, a shot, a surgery. Something that would ‘cure’ me. I always left disappointed and in tears when they couldn’t deliver. I am realizing that if I just take one day at a time, my outlook is so much better. I may never be ‘cured’ of the pain, but there are tools out there to help me manage. I am finally OK with that.”
8. “The biggest mistake I made was not telling any of my friends…. I was 13 when I was diagnosed with POTS and arthritis/tendonitis and I for some reason felt ashamed for it and I didn’t want any kind of questions or special treatment… I found out that people are truly understanding and there for me and that also I am not alone in this, my friends and family are here for me, and there are also so many others our there like me. Now I feel no shame talking about it and I will openly discuss my illnesses with anyone.”
9. “The biggest mistake I think I have made (and am still making) is not seeing the value in myself after being diagnosed. I was also making assumptions for others about how they saw me and what value I had to them. I somehow thought I wasn’t as valued unless I was doing everything as I could before. I remind myself that I am setting an impossible standard for myself and my value isn’t based on what I have done in one day, but how I have valued that day.”
10. “Not believing I was chronically ill! So many doctors for so long said there was nothing wrong with me — and so many people did not believe me (friends and family) that I constantly questioned myself — to the point I would question doctors who did understand there was something wrong. I kept thinking it was all my fault… I ended up putting off real treatment for a long time because I convinced myself that there was really some magic cure out there — and ended up making myself a lot sicker than I already was.”
11. “The biggest mistake I made was refusing to ask for or accept help. I made myself worse because I was being stubborn and thought that accepting help made me weaker. In all reality, accepting help made me stronger. I am able to admit to myself what my limits are and I’m able to progress better with help.”
12. “I just completely gave up. That was my mistake, I just lay in bed all day every day for weeks and weeks, I refused to shower or eat and I was hospitalized and tube fed because all of the energy just left me. The worst mistake was giving up hope, and I did that because nobody had told me about how to cope! I’d only been informed about the symptoms and that made it so hard to know how to cope through the first few months. I hadn’t even heard of the illness before so if I’d known I’d been able to cope much more!”
13. “Thinking I would find ‘the doctor’ who would know how to fix it all or that it could be fixed. Now I’m just happy if one listens and at least tries to deal with their part of it.”
14. “I would feel good one day, so I wouldn’t take my pain meds that day. Boy would I suffer! Or I’d feel good and do something like rake leaves, etc… then I’d be in pain for weeks! It’s been 16 years. I have learned!”
15. “When I was first diagnosed with reflex sympathetic dystrophy syndrome, I convinced myself that if I were a perfect, compliant patient and pushed myself every day, I could make it all go away.”
16. “My biggest assumption/mistake was assuming every doctor makes an accurate diagnosis. Sometimes they don’t.”
17. “Believing that I had to fight all the time. Refusing to accept my diagnosis meant that I was denying a part of who I am. Accepting is not giving up. It is learning to love yourself, diagnosis and all.”
Have you made any mistakes in dealing with your chronic illness, and if so, what did you learn from them? Share in the comments below.