Getting Accused of Asking for Sympathy

Hi

So maybe a year ago I made the decision to be open and unapologetic about my disease. But I do not go around starting conversations about it or brining it up randomly just to talk about it. But naturally, it does come up in conversation a lot because it is my life. And just this month I shared on Facebook two articles posted by The Mighty on IBD. The one was about how my disease isn't gross and i just shared it and said soo important. Then a few days later i shared the second one. The second was written by a young girl with IBD featuring a picture of a girl with sitting on the toilet with her head in her hands. The article said 10 things not to say to someone with IBD, and the even smaller caption said "When I am sitting on the toilet, shaking, losing pints of blood-don't tell me it could be worse." Idk, I just found it relatable. I got a few likes and didn't think much of it. But the next day, after another yelling crying argument with my mother on how I handle my ulcerative colitis, how I do everything wrong, and apparently blame everything on her- she said and "why did you share that thing on Facebook, that was disgusting and graphic, you are just trying to get sympathy. You want other people to say aww poor Jane. That was something mentally ill person would do to look for sympathy. I had people ask me what the heck was up with that why did she post that"

Maybe this dosen't seem like a big deal to other people but I can't even describe how hurt and embarrassed I felt. Also angry. I share a couple of things on facebook and all of sudden i'm begging for attention? Not to mention I share about 5 things everyday that are usually funny or silly stuff. I didnt think it was a big deal. It's a day later and I'm still embarrassed that people thought it was so horrible for me to share that. Im guessing it was other family members that said something to her as well. Anyway I'm at point where i feel like I can't do anything right. I just needed to see if anyone has ever had a similar experience. thanks

your mom has anal issues. she needs therapy.

There's nothing wrong with spreading awareness about ulcerative colitis. I never knew anything about it until i was diagnosed. Certainly others can understand us better if this invisible illness was a lot less invisible. I'd keep posting info.

Maybe unfriend your mom.

q

The root of the problem lies with your mother. I hope that you will be able to feel less hurt and upset and continue to post on FB regardless......this is exactly the sort of thing my mom would do, which is why I refuse to have contact with her (narcissistic) or my father (enabler)

You could share this list with her, perhaps:

https://en.wikipedia.org/wiki/List_of_people_diagnosed_with_ulcerative_colitis

Sounds like an education case, that your mom needs to know more about uc and truly understand how uc affects you.

I don't agree with some of the advise you are getting here.
Unfriend your mom is very easy but living in isolation will make your situation worse. Unfortunately you have to work hard to have at least one person on your side, it could be your spouse, sister, brother, mother or father

Prior to UC I had few medical issues and I never mentioned to anyone other than my spouse. Even when I was diagnosed with UC I didn't want to tell anyone (except my spouse) because I was afraid people will look at me like a sick dog. Second flare took me down really hard and not only I was the breadwinner had few other responsibilities. On top of that few of my close relatives thinks and except that I can help them financially.
So I opened up to few of my close relatives, I guess I was looking for empathy. They were very sympathetic and I felt like got rid of weight from my chest. Within a month I started to hear hurtful comments from them. I was wondering why and looking for ways to make them understand. I came to realize there is no form of communication will make anyone really understand my feelings and sufferings unless they are in my shoe. Now I don't talk about my illness with anyone. Whenever I run in to someone who knows me, first think they all ask, what happened and why did you loose so much weight? I tell them, I just have stomach ulcer and I try to change the subject.
I am a male in my late 40s with 125lbs.

Accidents, illness or death we all have to face sooner or later.

So I will never try to educate anyone about my illness because their priorities are different right now. They will learn on their own.

Again, I still urge you to have at least one person on your side.

What you'll find is there's different levels of how people care.

There's the social "hi how are you doing?", which people expect a response like "I'm great how about you?". My grandmother would respond to it with every ache and pain she had, and go into great detail when asked this...

There's advantage to sharing your medical condition with your spouse, your closest family and friends, and your boss (or teachers for those still in school or college). Better for them to understand why you might be late or cancel at the last moment (it's not a slight by me to you, but rather due to my illness). It's about convenience and understanding with those you interact with most. Better than constantly making up small, white lies on why you're not able to do things and feeling doubly bad about it.

Advocacy to loose aquaintensces can be rewarding to some, as you no longer have a secret bottled up inside, or feel weird or different as a consequence. As a bonus, you tend to find out that many people you know have their own struggles with other invisible things, I've found coworkers and others have chronic pain from injuries, have lupus, asthma, and other ongoing challenges that they also contend with. You feel less alone and less invisible which is great. The cost of it is some people can be insensitive, crude, and misunderstandings of your condition like "oh my aunt had that and stopped eating gluten and now she's fine, have you tried that?" (Maybe referring to IBS or GERD, i dunno). Just be prepared for it, like the Facebook posts you mentioned.

And there's been plenty of posts over the years of spouses, mothers and fathers being insensitive and not understing UC. It's awful but happens. You can try to educate or distance yourself.

Fundamentally, the only purpose of posting anything on Facebook is to get attention. You post because you want people to see what you have posted and to give you Likes for it.

Pick anything you've ever posted, and its guaranteed that some people rolled their eyes at it when they saw it. Most won't bother to tell you what they really think about what you have posted.

I looked for the "10 things" article on themighty but couldn't find it. Did you perhaps instead post "8 Things People Say To Me about Crohn’s That Piss Me Off (And What You Can Say Differently)" from Chronicbabe.com? Because that one has a picture like the one you've described, and it also has "But when I’m sitting in the bathroom shaking and crying, losing ounces of blood at a time, it doesn’t make me feel better to know it could be worse." (note: ounces, not pints, LOL)