Tuesday, July 29, 2008


Cystic Fibrosis can be so isolating, both for the persons with CF and the persons that love them. Obviously I don't know about having CF first hand, but I can imagine that it would be very isolating at times. So what I write about is what I do know about from experience. The isolation that spouses can feel because of the disease.

To start off it is important that you know a little bit about my husband. He is very independent and stubborn and has been determined not to let CF hold him back. He has been very careful about who he tells that he has CF and really doesn't like to talk about it at all. When we first got married he did not want me to tell anyone. Obviously my family and his family knew, but it just wasn't something that was talked about. So any discussions that I engaged in about CF were with my husband. And there were not many. He was in a form of denial, a place where he figured if he just didn't talk about it, it wouldn't take everything over. So we rarely even mentioned CF. I felt like I walked around it--that huge, obvious "elephant" in the room, but was unable to really even acknowledge it. That was exhausting and very difficult for me emotionally. At the same time it was really isolating because I had no one to discuss it with, so I held CF in. I internalized all of my thoughts, my fears, my anger, everything. I would cry myself to sleep at night, and really felt like I was completely alone--even with the man that I loved dearly sleeping next to me.

Eventually I told my husband that I HAD to tell some people about CF. I explained that I needed people to talk to about it when things were hard and I needed support for me. That was a big self-realization for me--that I needed help and that it was okay for me to go after what I needed. GB agreed that I could tell some friends, and I felt relieved to be able to at least discuss my situation with people that were close to me. Still, it felt like I couldn't talk to my husband about it, and I didn't feel like anyone really understood what was going on.

Over the years, GB has become more and more open about his CF and this has given me more ease with it as well. CF is GB's and so to the great extent, it is his to reveal (or not to reveal) to other people. That is something that I want to respect, but at the same time, need to care for myself.

That is why finding an online community of people with CF and caring for people with CF was so important to me. Finally there was a place where I could be totally open and free with CF. I could talk about the specifics of what was going on with my husband's health and also discuss my fears and feelings about life with CF. It was an amazing find, and one that has really changed my life (I know that sounds dramatic, but it is true!). There is still isolation in that I live in the real-world, and not in an online community...but the isolation seems less burdensome knowing people out there by name (or at least alias) that are going through similar issues. We share that common bond, that one created by mutations of the CFTR gene.

There are days when I still feel completely isolated. Days when GB is in the hospital or we are cooped up at home because he is sick. There isn't a way to get rid of those days completely, but thankfully with the support of some great friends--both online and in the "real world"--those days can be shorter and less frequent.


Amy said...

Awww Lisa. I know what you mean by isolation. It is scary and mentally challenging. I too was relieved when I found an online support group, where I met you of course :) It has changed my life as well, knowing that there are people out there that are going through the same things as you. It makes it all seem so much less scary. I'm glad we both found that online community, even if we are no longer welcome there LOL. You were one of the first people to answer my first question and I will never forget it :)

Betsy said...

The isolation can be the most destructive part of all of it, I swear. I am still "undoing" the effect of that on me.

With 20/20 hindsight, I would suggest (if you can) that you stay connected to at least one 3d support organization for you - one that is separate from the illness. Church, synogogue, a Buddhist group, the Universalist Unitarians, Association of University Woman, something...