Sunday, December 7, 2008

CF Group

I haven't decided whether or not I'm going to be upset over this or not.

At the hospital where I get my pulmonary care - UW Hospital in Madison, we have had two CF Support groups for the past four or five years. When I first started attending 'couples' group, I fell in love with it. I loved meeting people like me. I have also enjoyed the singles group (where just the person with CF shows up), but not in the same way I love the couples group.

A while ago I decided to stop pretending I could find someone to drag along with me to the meetings. I stopped dragging friends along. I wasn't sure what they got out of it. When I was dating someone long-term-ish I did take him, but one of the other members said to me, "Carla! You bring a different guy to each meeting." Awkward. My dad has attended with me, which was really good for both of us. My mom attended, but she didn't like it and wouldn't talk about it. But in the end, I stopped pretending and just went by myself. Which took courage. I am the only one taking care of me most of the time.

Now, they have added a "Committed couples" group. The exact words on the letter are "a group specifically for couples (married or not) that have lived with one another for some time and have cystic fibrosis as the 'third person' in the relationship." That leaves me out. I guess I'm still invited to attend the "family group" by myself because I refuse to dig up a friend and scare the hell out of them several times a year. Not only scare them, but bore them too! I live by myself, but that doesn't mean I don't want to learn from the wisdom of the "commited couples who have lived together for some time." I would like to be able to listen to their conversations, if only so I will have some knowledge before I ever have to deal with living with someone.

I don't know whether to talk to my social worker or not.

I am very passionate about CF groups - because the meetings I attended changed my life. They changed the way I look at my CF, and they definitely helped me feel less isolated. They brought me closer to two of the professionals at the hospital - the nurse coordinator and the social worker.

Will my favorite people still come to the "family group" now that they got their wish and have a "committed couples" group?

When things like this come up, my usual first instinct is to drop it. I will stop attending, and just forget about it - because that is easier. What is easier is not always best. I know I need these groups as much as I need my family and my friends. I wish I could be closer to the CF people sometimes, but I don't know how to make that happen.

I feel left out being the youngest. Being the single girl who lives on her own. Being pre-transplant. I feel like maybe I'm the reason some couples asked for the "committed couples" group. They got tired of hearing me talk.


Chris S. said...

I'll go with you sometime. Just let me know.

gahitstoni said...

I don't think you should be mad. There is still the other option, though I don't know the details. To have any type of option is great. There aren't Cystics around me at all so I am part of no group. I would be very happy to have even one option so don't fret. It will work out regardless if you get to go to the one you always used to go to, or a different one where you can meet new people.

Tiffany said...

I would suggest bringing this up with the folks in charge. Although it might seem like the social workers and shrinks know what they are doing--they might be just guessing. Truth is, it's hard to get people to come out to these groups and they may just be looking at a "marketing" strategy to bump the numbers. It's possible it never occurred to them that it might make some people feel left out.
Living with CF is living with CF, in or out of a couple. My guess is that you would still get a lot out of the group and they would get a lot out of having you there. Don't be shy, talk to the people in charge and find out where you can get the support you need. You aren't the first or only person to want a support group who doesn't have a person to go with you every week!
I understand your frustration but perhaps, once you talk with the people who run the show, or go to the group, you'll find it's not as crappy of a situation as it feels right now.
Good luck, girl. Keep on taking care of you!!!

Callie said...

If you're ever looking for someone to go to the meetings, check with me! I'm already here all the time anyway...

And yeah, I can see that being weird. I don't know if I'd take it personally right away, since it's probably just people doing things without thinking. People do that a lot, and they probably didn't realize how it would seem to you. I hope everyone still shows up for the couples meetings, though!


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