dealing with others

Rae786

New Member

Joined : Jun 2013

Posts : 5

Posted 6/22/2013 11:17 AM (GMT -7)

Ok so I guess my question is how to handle friends and family. I have been to my GP and he is almost certain I have Crohns or colities (though he is leaning towards crohns) I have had every test (short of colonoscopy) to rule out other things....I have to go see a GI here in about 10days. I constantly have stomach pain that comes and goes as to how bad it is and I constantly have nausea.....the throwing up has thankfully stopped (though I almost lost it yesterday) I have lost close to 15pounds since this stuff started. But when never I update friends on what is going on they just completely ignore it or act like its no big deal. They see it as 'oh your up and doing things so you must be ok' where it was a hug effort just to go....Im currently back and work....and sturggling thur the work days there as I deal with the pain and nausea.....though my coworkers I think 'understand' a bit more and dont write things off (i work in as a CNA) I dont a guess Im just struggling with the fact that no matter what this is Im dealing with I feel like my close friends are so distant and removed - just wondering if anyone has any tips on how to deal with family/friends

NiceCupOfTea

Elite Member

Joined : Jan 2010

Posts : 10718

Posted 6/22/2013 11:54 AM (GMT -7)

It'll probably get a bit better once you have a diagnosis (incidentally, get a colonoscopy - it's the best test for diagnosing Crohn's). But not enough, unfortunately. Crohn's is what's informally termed as an invisible disease, so you can be knocking on death's door and people won't realise it from your appearance. Fifty years ago, weight loss would have been a visible clue but everybody is so desperate to be thin these days, looking anorexic is, if not seen as normal exactly, not seen as a cause for concern either.

People who are healthy don't get the fatigue, the discomfort/pain, and the being unwell. My solution was to never talk about it, but sometimes that would create a resentment at those would would moan for 15 minutes about a cold, for example. I was also in the position of not needing to explain myself: it's obviously a lot more difficult if other people are relying upon you, such as work colleagues.

Try explaining that Crohn's is a bowel disorder which does far more than make you go to the toilet a lot. It's a chronic inflammatory condition, and the inflammation has a range of destructive effects. (I could go into them, but I have a feeling people aren't gonna want to hear about fistulas, abscesses and strictures. However, inflammation can also cause fevers, joint pain, high platelet count (increased likelihood of blood clots) and anaemia in Crohn's.)

I would try to get the diagnosis first, though, before having a talk with friends and family.

starreyedgyrl

Regular Member

Joined : May 2013

Posts : 97

Posted 6/22/2013 3:07 PM (GMT -7)

I'm so sorry....I think dealing with friends and family can be one of the most exhausting parts of this disease. People are jerks- even people you're related to. I discovered when planning my wedding that I will *never* be able to count on my family to support me during a major life transition- they will always find a way to make it about them. This pretty much ruined my wedding, but it was a valuable lesson.

So, find who *is* your support team. I'm lucky to have a couple folks with Crohn's nearby, who are a bit further down the road with managing and learning about their disease than I am. They're the best, because they *know* what it's like to have your hands hurt so badly you can barely get dressed, or needing to sleep 12 hours a day. Figure out who in your life is on your side, and who is just there because they enjoy drama.

I'm still figuring out a way to deal with family- so far, I let them know every time my GI orders a change in treatment (so, emails/phone calls at diagnosis, the discovery that Asacol wasn't controlling the disease, when 6MP made me horribly ill, etc). I'm on Humira now, so hoping there won't be any more treatment changes in the near future! Another friend tells his family every time he's going to be sedated. I do think, in general, it's a good idea to let loved ones/family know about major changes in your disease, but that's such a personal thing.

James Lang's book "Learning Sickness" is easy to read- it's a very honest overview of a really bad year of Crohn's in his life. His disease is much milder than mine, but I'm still contemplating buying copies for my family members.

I think the first thing is to figure out what you want from your friends/family members (support, for them to not say awful things, etc). Sometimes just not returning their calls is the best choice for my sanity- it may be similar for you.

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