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Article: Five Things I Wish I’d Known Before My Chronic Illness

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Ulcerative Colitis
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Posted 2/20/2019 2:45 PM (GMT 0)
From the NY Times, written by a crohn's patient:

Five Things I Wish I’d Known Before My Chronic Illness
https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html

  • The mental part is as hard as the physical part - Chronic illness patients not only face painful physical symptoms, but also mental ones that linger even when the disease is well controlled.
  • Your relationships change - It’s hard to be a good employee when you need extended time off. It’s hard to be a good friend when you cancel plans last minute. It’s hard to be a good partner or parent when you barely have the energy to get out of bed.
  • Everyone offers you advice - People are compelled to offer advice about chronically ill bodies because they’re convinced a fix must exist.
  • You have to educate yourself — and everyone else - Learning as much as I could helped me feel a sense of control, so I bought every available IBD book and spent hours reading studies and forums online.
  • Support is everything - Chronic illness is really lonely.
Posted 2/20/2019 3:47 PM (GMT 0)
Truth, especially the mental part. People think I am exaggerating, but it is really some for of PTSD that we have on top of the illness. The whole article is great.
Posted 2/20/2019 7:06 PM (GMT 0)
I am reading the story of my life smile

Although...did i wish i knew it before I got sick? I don't think it made much difference...
Posted 2/20/2019 8:23 PM (GMT 0)
This is so true!! I got to the point where I didn't tell anyone about my UC because some would say "you don't look sick". Others would try to give advice even though they had no clue what they were talking about.
Posted 2/21/2019 3:26 AM (GMT 0)
Terrible disease when in full flare,mentally,physically it can beat the s......t out of you.It takes u hostage.Happy for my surgery,life is good now
Posted 2/21/2019 5:00 PM (GMT 0)
I can relate to not talking about UC with people. The thing I've learned is people really don't want to hear you complain about anything...illness, relationships, work etc. Also, nobody really cares that you are sick and will never be able to relate to what you are going through. I have a co-worker with Crohn's who has failed every therapy. He misses a lot of work and is seen as lazy and a deadbeat. I defend the guy but it is useless. People are stuck in their own worldviews and no amount of explaining will change anything. Since he "looks fine" nobody will believe he is seriously I'll. My advice is to make people aware of your illness but leave the subject alone beyond that.
Posted 2/21/2019 5:07 PM (GMT 0)
Truth. I know there are a few social gestures we repeat ad-naseum: hi, bye, how are you feeling/doing, how was your weekend/vacation, etc etc? People expect a short and concise response as they don't really care all that much about your answer. Sure, if there's a person at work not seeing carrying his/her fair workload (regardless of reason), then it makes others work harder, so I can see them going down hard on said individual regardless of the why. We're all inherently selfish, where how it affects "myself" is what matters most. Therefore it's easy for us to be labeled complainers, fakers, deadbeats, or taken wrong for unexpectedly cancelling plans, as examples by others. Totally unfair and mean but it's also human-nature.

Post Edited (iPoop) : 2/21/2019 10:13:35 AM (GMT-7)

Posted 2/22/2019 3:32 PM (GMT 0)
I find there's a fine line when it comes to "joking" about it with other people. I think everyone has experienced spontaneous bursts of diarrhea and so my family and friends will sometimes try to relate my struggles by comparing it to their own embarrassing bathroom mishaps. They tease I'm the worst person to road trip with because we may end up on the side of the high way again - HA HA HA. Sometimes it helps to turn it into something more relatable and laugh at myself. Sometimes I get fed up and say "It's more than just the embarrassing scramble of getting off the highway and into a gas station bathroom ASAP - what you don't see is when I'm in there i'm in pain and seeing blood and it is NOT too funny at all." But, alas, no one wants to really talk about that part.
Posted 2/22/2019 4:33 PM (GMT 0)
Hey I'm a recovering alcoholic and drug addict.Just celebrated 30 yrs sober Feb 2nd.Most people still think addiction is not a disease,people think your weak if your a druggie or alchy .UC or any IBD isn't really out there like cancer.But many people couldn't understand that i couldn't hold it in and i would try to explain to some but its there choice to open there mind or not.So IBD and addiction are similar in that society isn't educated enough or can't open there brain enough to understand.Funny the night before having my colon removed i got hotel in NYC bc of 6:30-AM check in. Well my 21 yo son came in with me and told me as we hung in hotel that my UC is a sign of weakness.OH LORD i thought my son had a brain.Well i googled athletes and entertainers with any IBD.Well after he saw list and read there stories he thought differently.QB from Clemson U got very sick in high school while being a BIG College football recruit and few hip hop/rap singers have UC or IBD.Now my college educated dummy understands Daddy a little more and I'm a little cooler bc people he looks up to can't hold there poop in like Daddy used to.
Posted 2/22/2019 5:28 PM (GMT 0)
Sounds like being misunderstood as a generalization is more common than we initially think it is! I do think if people were more open about it, others would mention their own chronic struggles as well and we'd feel less alone. Sharing my health at another job I had in the past, people mentioned their own struggles with chronic pains, IBS, diabetes, and many other similar invisible illnesses (also addiction or depression are other good examples, as well). Again all things people tend not to blurt out, unless you initially share your own struggles.

I know humor, often self-deprecating, is part of my own defense mechanisms of coping. Although agree that there's times that someone's joking turns into wound-inflected though!
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