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Working while having UC (among other things)

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Ulcerative Colitis
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Posted 4/30/2014 7:25 PM (GMT 0)
I work full-time because we can't really afford for me not to work at all, but do any of my fellow working UC'ers find themselves dreaming about going on disability? Along with UC, I suffer from migraines, joint pain, hideous menstrual cramps, depression, fatigue, and it seems like I always have a cold/flu/sinus infection. I miss a lot of work for one illness or another, and on top of missing work because I'm sick, I miss one day every 8 weeks for my Remicade infusion. I know my condition isn't bad enough to warrant disability, but sometimes the stress of having to call in sick to work, or going home early, or being at work and having to run to the bathroom several times just gets to me. And heaven forbid I have a client at my desk or on the phone, and the urge to run to the bathroom hits!

I know I'm not the only one facing this, and I know it makes me sound like a baby, but sometimes the working thing just seems to make everything else so much worse. :(

Posted 4/30/2014 7:51 PM (GMT 0)
What's the alternative? Giving up will lead to a fast health decline. I know, that would seem impossible but it's not. How many of those things are related to either your UC or it's treatments? There's something to be said for surgery sometimes. If UC or Remicade are doing these things to you maybe surgery would be a better option.
Posted 4/30/2014 9:45 PM (GMT 0)
I dream about not working. I'd love to hit the lottery and retire - to travel and hike and horseback ride and take epic rollercoaster vacations :)

I can't see me thriving as a disabled person. I hope that portion of my life is short and a long way off. Since I need the income anyway, I am glad for the 40+ hour distraction every week.
Posted 4/30/2014 10:20 PM (GMT 0)
honestly, when i applied for disability, i would've given ANYTHING to not be in that position. i qualified with my illness and that just made me even more depressed about my situation and how sick i was.

working again has made me so happy because that means i feel well enough to work.

would you be able to do part time instead so you have more time to recuperate?
Posted 4/30/2014 10:30 PM (GMT 0)
I think going on disability, focusing solely on healing and then going back is a good option, if they give it to you. I would definitely press, gather the required documentation and try to get it. Health is something we only get once and the 40-80 hour work weeks are doing no favors to the American population. There was a prominent article the other day about sleep deprivation and stress leading to many issues for the body, including cancer and autoimmunity.

From personal experience, I turned to painkillers, steroids and other medications to "mask" the symptoms when things got rough, but all it did was make things worse for me and burned me out. At some point, the body gave out and I nearly lost adrenal function. I was literally a zombie at work and half-assed everything I did. I showed no passion and desire to do anything because I was tired and depressed all the time. That's no way to live.

I really can't put it better than the Dalai Lama here. It's just so true given what's happening to so many people I know.

Post Edited (Guardian7) : 4/30/2014 4:33:03 PM (GMT-6)

Posted 4/30/2014 11:16 PM (GMT 0)
I'm in the "better to be well enough to work" group. I was on short term disability for a month, it was awful. It was even more depressing to sit at home and be too sick for anything. I felt like a failure. I had nothing to do but lay about and wallow. I was incredibly happy to be well enough to go back to work (and I was still flaring, just not so death bed intense). Honestly, if you're so unwell still then you need a change of meds or, like Gary said, consider surgery. One shouldn't have to leave the work force before their time. Your quality of life will surely be diminished. So, to answer your question, no, I do not dream of disability. I pray (and pester my GI) to ensure I will continue to be well enough to work.
Posted 5/1/2014 12:14 AM (GMT 0)
Yeah. If you're going to dream then dream of bettering yourself, not running up the white flag.
Posted 5/1/2014 1:09 AM (GMT 0)
Wow.

If someone believes that going on disability is raising the white flag, then I don't even want to know what level surgery is considered. I'm not completely against surgery as it's a gray area (as with disability), but two can play at that insensitivity, ignorance, complete lack of empathy and compassion game that some folks love to play here.

And advocating surgery over disability to fix residual issues and not taking the time take care of one's health and kids... That's a new one that I just won't ever jibe with in this lifetime. Stress alone from work increases the risk of stroke 3-4x fold, and the same applies to the risk of heart disease.

Post Edited (Guardian7) : 4/30/2014 7:12:50 PM (GMT-6)

Posted 5/1/2014 1:26 AM (GMT 0)
My home life is much more stressful than my work life.

I'll be on short term disability for my surgeries. I hate the idea of being stuck in the house & unable to care for myself. I guess this will be time off to improve myself :)
Posted 5/1/2014 1:30 AM (GMT 0)
I'm with Guardian. Would I trade my colon for a job? No. not ever.

Disability, for a young person should be a time when we focus on healing and then go back to work. It's not the white flag, it's a time to retreat and regroup to come back full force and full of vigor. There HAS to be way to get better, even if it takes a long time.

I've been useless since January. I can barely walk and the pain is getting worse. Not having income is stressful. I'm thinking about applying for assistance so I can have some autonomy or something. Not even sure what kind of assistance is available.
Posted 5/1/2014 2:18 AM (GMT 0)

jswindler0 said...
I know my condition isn't bad enough to warrant disability,. :(

So, I just want to clarify my position. Disability is there for when someone truly needs it, and if your condition gets to that point then you should look in to it until youre well enough to go back. I think maybe there was just a little confusion about the idea of "dreaming about going on disability" I'm sure you don't really mean you want to give up and accept that this is how you're life will be forever. If so, then that makes me sad and that's when looking in to alternatives or surgery would be worth it. Just my opinion though.
Posted 5/1/2014 2:10 PM (GMT 0)
Surgery has its own share of complications and it is by no means a panacea to anything. Implying that surgery will fix her issues and that she'll be able to go back to work all safe and sound is very premature and something that really grinds my gears. She'll need time to recuperate, deal with complications, schedule appointments, and so fourth. It's not a joke procedure and it carries with it some well defined risks.

Some of us desperately need time off to plan how we'll deal with this. I don't think remaining on autopilot, while sacrificing one's health is the right thing to do. I did it and it burned me out. I wish someone had pulled me aside and told me to prioritize my health over everything in life. When a UC or cancer diagnosis hits the fan, the outlook isn't very good, so why not focus on fixing health first? Most people are train wrecks and one stressful event from a disastrous health situation. If 41% of us are destined to get cancer, then I am very scared for everyone around me.
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