I finally told a friend... and I regret it.
Fri, February 08, 2019 10:48 PM
Sometimes it feels like if I were to express the level to which my symptoms have been debilitating, someone somewhere would tell me that it could be worse. I've had doctors write me off as a stressed-out college student before.
Well, that's exactly what happened today.
I took a step today and told one of my closest friends of what I had going on. That I had ulcerative colitis. That I was just diagnosed a month ago... after 8 years worsening symptoms, and not knowing what I had going on until one doctor finally took me seriously.
“I remember studying that in class,” she says, “I know Crohn’s is worse, what you have is mild, it’s not that bad.”
“There is medicine for it. Just take it and you’ll be fine in a few weeks.”
“A lot of other people have it too and they’re doing just fine.”
I couldn’t believe I had the sudden urge to prove to her what I was going through was real. That the extent of the effects of UC in my life were real. The weight loss, pain, inability to eat, fatigue, the resulting depression, just.. everything was all real. The findings in my biopsy report were at the tip of my tongue, as if somehow this was an argument I needed to win.
All I know is that I’m never going to do that again.
One thing this entire experience with my health has taught me is gratitude for the small things in life, as cliche as it may sound. I feel incredibly blessed for all the conveniences, comforts, and opportunities I have in life. There is so much to be thankful for.
But… I can’t help but feel invalid when I get this kind of response. It just makes me regret saying anything at all. That somehow I'm being dramatic... that things aren't as bad as they seem. That it could be worse.
Joined Feb 8, 2019
Thu, March 14, 2019 10:43 PM
Reply posted for rose95.
Been there. I tell myself they're good intentioned because I like to think most people are. I remember people telling me emotionally invested personal things, and I feel the same urge to cheer them up, tell them to look at the bright side, try to present treatments and solutions. It's the human response. The hardest thing is to listen to a friend speak about pain and just listen, try to empathize, sit and live it with them while they share. It's what we seek but it's hardly ever what we get. Try not to blame them or shut yourself off from trying to share again. Feeling heard is important but it won't happen if you don't speak. You're not alone.
Joined Mar 14, 2019
Wed, February 13, 2019 10:13 AM
Reply posted for rose95.
If your doctor said “I remember studying that in school” you need to upgrade to a GI who specializes in colitis. I remember talking about my illness to people and many seemed to only understand cancer and heart attacks. They just couldn’t relate to colitis and it’s various symptoms. There were times I felt so bad wished i could hang a handicapped placard around my neck.
charbsJoined Oct 31, 2016
Mon, February 11, 2019 8:00 PM
Reply posted for rose95.
The first thing you gotta know and believe is that you, your feelings, and your symtpoms are valid. I've struggled a bit with people trying to empathize with how I'm feeling when they have no possible way of knowing what it's like and i agree, it sucks. I've also been in so many positions of thinking that I have no right to consider myself sick because others with UC have it way worse than I do, which is not true in the slightest. UC affects us all differently, but it still affects us.
I also understand what it's like to confide in someone and feel like it's backfired on you. But having a supportive community is so important when you're dealing with something like UC or Crohn's. I would start with a support group, people that are actually able to empathize with you andtruly understand what you're dealing with. Even if it's not specifically an IBD supportive group. I attend a chronic illness support group at my school and even though none of us have the same illness, it's really nice knowing there are people around me that know what living with a chronic illness is like. As for your friends/family, sometimes it takes time and sometimes it takes the right person to make you feel like you've finally found someone worth telling.
If anything, I hope this encourages you. Your pain and symptoms and story ARE valid. And there are people out there that will lift you up, not make you feel invalid, you just have to find them :)
Joined Feb 4, 2019
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