So sick, my life has passed me by

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I've spent all of my 20s in sickness and my life is passing me by. I don't get to live, my health has me being nothing more than a spectator. One serious health problem has come after another.

My bowels are nearing the maximum level of sick they can get. Take crohns, subtract the blood and inflammation, mulitply the diarrhea, and other symptoms, divide the treatment options and understanding from even those in the meeical profession, and subtract any periods of remission and thats where I am.

Friends ask me "are you STILL sick?". Each time they ask that I regretfully have to tell them yes. People in my life have moved on and I dont blame them. The resulting loneliness and hopelessness is crushing to say thr least.

The dwindling list of possible treatment options grows shorter and shorter while the stack of failed treatments stack and pile up. I don't know how anyone could be expected to remain hopeful at my point in my shoes.

Hi Noca, Sorry to hear you are so sick with intestinal problems. I have a weird intestinal thing called sclerosing mesenteritis I was dx at Mayo. It's something I will have for the rest of my life. So I understand the "you're still sick?" comments that you are getting from others. I get those comments too. People don't understand that I am always sick, every single day. Are some days more tolerable than others for you? Wish I could wave a magic wand to make you feel better. (((HUGS)))

Thanks. Yeah some days are better than others though I refuse to live another 30 years in this sh***y state of health. Tired of having to make concessions in my life. Been doing that for the last 1/3 of my life.

I think I set my bar very low at this point. I just want to be able to eat solid food without severe gut aches and diarrhea. I don't think I'm asking for much out of life at this point.

Noca, I'm sorry you have been given such a tough row to hoe.

Anyone who has had to cope with chronic illness must come to terms with their losses and learn to look at the things they still can do, no matter how small or trivial or "ordinary" for other people without chronic disability. I found a rehabilitation psychologist very helpful in focusing towards the positive and away from the negative. (Here, rehabilitation means physical or orthopedic medicine, not drug treatment.)

I don't know if you are on disability at all, but I think you would qualify. Having a little income can give you more choices.

Thank you Bea for your support. I am lucky to have disability benefits since 2007, for social anxiety which allows me disability benefits until age 65 with no chance of review of my condition as its considered permanent, even though my bowel problems far surpass any anxiety issues I have.

They have helped with taxi rides to my medical appointments, additional money for my special nutritional needs. I also have a social worker and a peer support worker to give on going support. My parents help me as much as I can. There is no way I could hold a job in the state of health I am in atm. It still really gets me down looking back at how much of my life has been wasted by sickness as I turned 30.