Struggling with an Invisible Illness

I think that’s why i was drawn to this app in the first place. Some people are just downright awful and blame you but even people who are kind and caring still have trouble understanding if they’ve never been through it before. I never knew that the loneliness of being sick can be just as bad as the illness. I hope you can find a sense of community here or in your life that helps lift the weight. ❤️

People with health problems do understand better. My illness was invisible until the age of my illness destroyed my body. I know it's not great to have chronic illness but after almost dying. I realized in some situations my illness has helped me. Even tho it sucks having it. My insomnia causes me to work night shift easier my neuropathy keeps me up anyway. It also helps in an at night family emergency. So I use it as my advantage. Where I have ehlers danlos syndrome. If no one can reach things when tho it may hurt... I can get it. My acid relax causes me to eat less due to the acid burning. It keeps me thinner. I know if it will rain because i can feel it. I get migraines when its about to snow. I won a few dollars off of it. Lol. Some people may find what I'm saying as offensive. I absolutely know there's more bad then good. It's a way I look at my illness. I use it to shine light on it. I try to laugh and enjoy my life even tho it's painful to live.

What to do

I just endured two days of his family at b day dinner then breakfast with pictures being taken to exclude me his girlfriend live in caregiver and no one sat next to me out of 9 at table for ten at breakfast ! Refused to have pictures taken till I asked watress to stand next to me not including me ( we are restaurants regular s) ! Even grand kids and two daughters no eye contact or speaking to me at either b day event for my bf who is 80 ! Moms been gone five yrs ! Geez

I can completely relate and it’s so frustrating and sometimes hurtful. No matter what you say, there will always be an invisible barrier between you and people without chronic illness preventing them from REALLY understanding. It can make me feel insane because they can’t even fathom it.

I'm sorry that the people in your life aren't getting it or are being rude! I've found that other chronically or mentally ill people tend to be more understanding. We can all sort of relate to each other even if our symptoms are different. Try using the spoon theory for explaining to healthy folks if you haven't already. I think it lets folks know just how meticulously planned and careful we have to be to avoid flares - and even then sometimes it doesn't work and we end up having to spend long amounts of time recovering. Like,, there are lots of things I can't do because I don't have the spoons or need to save them for another activity