Disability, how do you cope being on it

If you’re on disability how do you cope with that fact, when your mind is ready to work, but the body can’t be predictable?

I am on it and I keep it a secret from everyone and it bothers me.

I’ve paid into 30 years of work , same industry but I struggle mentally with receiving benefits when I’m in my mid 50’s

I appreciate that I am getting something but man it doesn’t feel good not to be doing something to contribute in life.

There are ways to work and have flexibility like cleaning I suppose.

I just need to talk to people who are in my same situation.

I have no one in my town and never would tell anyone in this small town. My friends don’t even know.
I feel very lost.
Any suggestions?
I’m not in remission, I’m having a Ct scan of gallbladder and see if I have a hiatal hernia. I don’t bleed anymore that I can see but my stool test over counter says it’s there.
My stricture is there still and that’s tough. I’ve been through a lot of this with this disease. Terrible.
Thanks for some kind words back.

Is surgery an option??
See I know feeling you have,I had Uc for 32 years.
My gastro wanted to put me in Humira or Remi after last colonoscopy and I said NO. I want my life back. I chose surgery and both my gastro and Surgeon agreed. Best decision I ever made. I'm a contractor in NY,I'm 6'5-240. I love physical work.
UC had me hostage but no longer does.
No anxiety in morning wondering if I'll have accident in my pants going to work.
Once I did my research on surgery I knew it was my best option for a return to a normal life.
His bless and good luck on your journey😊

You have been through a lot with UC over time so I'd say you're entitled to stay on disability if your gastroenterological condition gives you continuing trouble. It sounds like you're feeling blue, which can happen to a person used to working full-time for years. Try to stay positive, think about ways to perk up your nutrition and relax with a calming activity you wouldn't have as much opportunity to do while working. I remember taping music I loved from FM radio back in 1980s while on disability following my UC diagnosis. That sparked my mind, led me away from major worries, and gave me a sense of purpose short-term. Think of something you've always wanted to know more about and look it up online, or a performer you like who may have videos on YouTube, that kind of distraction. Tell yourself every day that you can see, hear, walk, and talk-- so your health can still improve. Most of us with UC have to conceal a number of our problems, especially bouts of incontinence, because other people won't understand them-- so consider yourself brave for protecting your personal info by not "going public" about everything to people in your community. I once had an unsupportive boss who considered me to be lazy, while I was really suffering with a bad flare-- then eventually it didn't matter what she thought. That's just the way life can be at times; it's not a UCer's fault. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

What your mother did is messed up.

Oh thearemiracles, my eyes welled with tears reading your post. Iam sending you lots of love, prayer, and a huge hug.
I remember you and your trials and tribulations from when I first joined this forum more than 12 years ago.

I have been on a year long career break and don't know when, or if, iam ever going back to paid work.

Frequent flareups since 2019 mean my body and mind can no longer take the pressure of regular paid work.

I have always been an A+ student, always excelling in my studies and so my academic and work success was always a big part of my identity.

I have not told everyone why Im off work, I just say Im trying to spend more time with my kids.

But in truth, Iam spending most of my time dealing with this disease. Most of my mornings are spent dealing with UC toilet trips, UC fatigue, UC supplements and meds and their side effects, calling doctors and scheduling appointments, doing blood tests, wondering how I can stay out of hospital.

My experience with telling people the real reason behind my career break, the UC, is that only a fraction of them ever say the appropriate thing. They always just gawk and look bewildered. And then continue to blab about whatever they were talking about previously.
Truth is: most people do Not understand this disease. Or bother to learn about it. Or care enough. Most people are already in and over their heads with their own personal crap and are too busy to pay attention.
Not saying they are selfish, just that the modern world we live in is all too demanding.

My advice: do what feels right for you and your body. Only you understand. Only you feel the pain your body gives you. My career break has been the best thing so far because if i was dealing with work on top of my flareups I would have a nervous breakdown.

ther..... Oh I know your pain and the guilt you feel. LOL I was forced into retirement before I was ready also, due to other health issues. For about the first year, I didn't want to go outdoors during working hours. I'd watch my neighbors heading out to work every morning, see my wife off to her job, and I would sit around all day feeling like I was pretty much useless. I'd worked at one job or another since I was about 8 years old. Got my first real, paying job at 12 and every summer I would find a job of some kind. After the military, the only time I didn't have a full time job was when I was in college. Then I worked for the next 30 years until...I couldn't. After about a year, I decided to quit feeling guilty, see my wife off to work and find a way to enjoy the days. After that, it was much better. The thing you have to convince yourself of is...you did your best and now it's time to pass on the torch. LOL MAKE yourself get an interest, a hobby, activity, or maybe even volunteer work when you feel that you can. If you are feeling sick, relax and recover. Do what you can and try to enjoy a LITTLE of every day. They go by so very fast and are not given to us to waste feeling guilty. It WILL get better for you. If you can do nothing but go outside, look up at the sky and be thankful for the ability to see the beauty of the day. Best of luck to you.....you will be just fine.