Parents unable to understand, and it's splitting us apart.

I *totally* understand this phenomenon. I guarantee you that this sort of thing has happened to many of us with ulcerative colitis (and other chronic conditions). Some folks are so scientifically illiterate that they believe that all can be cured with a positive attitude and a lifestyle change (diet, sleep, smoking, drinking, whatever!). This is *particularly* frustrating when it involved people one cares about and loves, such as your situation with your parents.

My best advice is for you to extend understanding and patience to your parents. You know them better than anyone else, and you simply need to explain to them, perhaps several times if they are stubborn and obstinate with you, that this illness is generally not treatable through lifestyle changes alone. Moreover, you cannot stake your well-being on unsubstantiated treatment protocols (whatever they're recommending to you, of course!). Ask them to trust you and your judgment, and assure them that nobody is more concerned with recovery than *you* are. And again, I recommend communicating these messages with love and respect. I know it's difficult, and it strains one's patience, and it's easy for me to tell you this from behind my computer screen... but that's my humble opinion.

Post Edited (Robert.K) : 10/29/2012 12:08:40 AM (GMT-6)

I am sorry for your situation.
Fortunatly I have parents who do get it. But was told many times by god knows who that my diet should change and i should be fine.
But they weren't so close so the implications were minimal.

Would they listen to an asian doctor?? I mean they need to listen and trust you first but sometimes an old school asian expert could make them see things differently?

How long have you been diagnosed with UC? My parents didn't get it for months. They weren't giving me a hard time about it, but my mom especially was telling me to "suck it up" "sometimes you have to work sick." This was when my pulse was 110 (while sitting at the computer), I was spiking fevers, and going to the bathroom 20 times a day (mostly blood). I ended up in the hospital about three days after that conversation and I think they didn't really "get it" until then.

Of course, I hope you don't get to that point. But maybe you need to pound it into their heads a bit more (albeit it patiently). Also, is there anybody your parents respect that they would listen to (and that you also know understands that you are actually sick).

Alternately, can you avoid the subject all together? It has to be so frustrating to get unsolicited unhelpful advice (or nagging if you want to put the honest spin on it!).

Sorry to hear that your parents, of all people, aren't supportive of the issues you are having.

I guess I'm in the opposite boat, in a way, as my dad also has UC and my mom has celiac and a bizarre array of other food intolerances, so we can all sit around and commiserate about our conditions...

Sorry about your parents dinkydonuts. My parents are the same when I have mild symptoms. When they are more severe, they'll sit and listen and make efforts to help me. I am Asian btw as well.

OT: I am surprised by how clueless and "textbook" educated many G.Is are regarding IBD in Asians. My G.I tells me that Asians rarely get IBD and that 75% of Chinese don't have the enzyme to break down lactose (hence 75% of Chinese can't drink milk). Having lived all over mainland China for 2+ years, I know for a fact that his thinking is horribly outdated. I have never met anyone in China who has a problem with milk and IBD is prevelant in many of the coastal cities.

Somedude it i mostly north americans, jews, irish decents, caucasians. But mostly caucasians doesn't mean only caucasians. You see it's like a bm with UC: It's mostly blood and mucous but not only blood and mucous aha

Somedude said...
Wow, two asians with U.C. I didn't think it was possible for asian people and black people to get U.C. Ok, OK, I am exagerating, but I thought this was mostly a caucasian disease.

We're one big and happy multi-racial and multi-ethnic "family"!

aguywithuc said...
They cannot 'see' it like a broken leg in a cast.

Can they see it when you're in the bathroom every thirty minutes screaming in agony, or when you've nearly lost consciousness from the pain and are sprawled out on the floor in a cold sweat?

dinky, i can totally understand how you feel. my UC has caused me to cut off all ties with my dad. i haven't spoken to him in so long and it feels awesome. the amount of stress he put on me and always blaming me for my UC was just destructive and i didn't want it in my life anymore. you can decide when enough is enough. if they are bringing anything positive to the relationship, then why associate with them? yeah, they are your parents, but it's when you're sick or hurting that you need support the most, and if they can't provide that, well, it's your call.

It aint easy being human. Its even harder with stupid parents.

     I think educating them about the disease, i.e....pamphlets or medical reports about UC.  I ditto the idea of taking them with you to your next GI office visit.  My parents were both deceased when I developed UP at age 52.  I firmly believe I inherited the gene from my dad's side of the family.  When I was having my operation (total colectomy with end ileostomy) I learned my paternal grandmother, who died from rectal cancer, suffered the same exact symptoms that I suffered.  She died when I was six yrs old at the same age as I am now....coincidence huh?