Post #77: I think I failed the support group quiz

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Why is this pic under "support group clip art?" Perhaps it's a group for big 80's hair and questionable facial hair decisions.

 

Today's prompt: Questions I have for other patients

 

Oh prompt. I have so many questions! It would be easy to ask these questions at, say, a gathering of other Crohn's patients. Like a support group! (sound of running down a hallway and slamming a door).

 

Ok, I'm back. I don't know why I am so adverse to the concept of a Crohn's support group. It has all of the things I say I'm searching for....but the idea freaks me out. I will happily share my concerns and questions with friends who have absolutely no idea what I'm talking about (TNF blocker whaaaa?), but ask me to sit in a room with 10-12 other people experiencing the same symptoms and possibly taking the same medications and I will cling to the door frame and refuse to leave the house. I write a Crohn's blog, but I am hesitant to talk about Crohn's in person. COMPLICATED!

 

To try to sort out my feelings about support groups, I googled "are you ready to join a support group?" which was like the 10th most popular answer after "are you ready to have a baby" and "are you ready to quit smoking." Here are some questions, adapted from here:

 

Do you enjoy being part of a group?  If that group bakes cookies and wears yoga pants and       watches "The Breakfast Club," then yes. If I am required to talk about FEELINGS, then no.

 

Are you ready to talk about your feelings with others? See above.

 

Do you want to hear others' stories about their Crohn's? No. Maybe. Scary. Run away!

Would you like the advice of others who have gone through different Crohn's treatments? Yes.

Do you have helpful advice or hints to offer others?  No:(

Would reaching out to support other Crohn's patients make you feel better?  Sure?

Would you be able to work with people who have different ways of dealing with Crohn's? You mean people who shun drugs and only eat south growing tree moss and think I'm DOING IT WRONG if I don't follow their strict moss recipes and refuse to CURE MYSELF with their forest based diet? Then no.

Do you want to learn more about Crohn's and treatment issues? Again, maybe. Scary. Run away to the forest for post group moss collection!

Ok! After taking this quiz I sense some ambivalence about the support group experience. Actually, let's call it what it is: fear. I am afraid of making the existence of my Crohn's any more real than it already is (i.e., by talking about it), or seeing someone who is struggling with advanced disease. That would be kind of devastating. I don't want to see what may or may not be in my future.

At some point, I think it would be a healthy thing for me to face my fear, put on my grown up lady pants, and make some connections with people who are like me-who have Crohn's. If/when I do so, here are some questions I would ask:

1.) How the hell do you hold down a full time job and deal with an unpredictable colon?
2.) How the hell do you hang out with babies (germy, germy babies) without getting sick? I always get sick from baby germs.
3.) How do you turn off the constant worry?
4.) What are your tips for being a better family member/friend when you feel like crap all the time? 
5.) Have you tried tree moss? Was it helpful? (kidding!)
6.) What do you think of delaying a taper off steroids so the decrease in dosage doesn't coincide with Thanksgiving, which would allow you to eat a greater variety of foods?

That last one is topical, but the rest are pretty timeless. Maybe someday I'll get a chance to ask them, in person, away from this blog. Face to face.