Sickle Cell Support Group


Last week when I saw my hematologist, he encouraged me to be part of a support group. Norio has been pushing for me to join one for months, but I’ve always resisted. Besides the support I got from my friends, family, this blog and the online forum, I didn’t think I needed anything else.

He proactively got the phone number of the group here in Portland and drove me there last Tuesday night. All the way over there, I kept telling him it was a waste of time and that we shouldn’t bother going. “I don’t wanna sit with a bunch of people going woe-is-me,” I scathingly said.

Norio very stubbornly dragged me there, and we were late. Walking into the room, I crept into the room and tried to very unobtrusively take a seat. “Welcome!” the moderator said, inviting us to introduce ourselves to the group of about 15 people. I gave a stilted intro and then sat right back down, for some reason nervous as all get out. She seemed to understand this and kept on with the educational part of the session. About 10 minutes later, she broke the group up, and told us to interact.

Coming out of my shell was hard, but when I realized that out of the 15 people, only 3 of us had sickle cell, it became somewhat easier. One was younger than I was and very shy, and we hit it off almost instantly. Talking about how sickle cell affects me personally was more therapeutic than I thought. We rhapsodized about crappy veins, bad ER visits and life as a warrior. His mom and aunt were there as well and they were so sweet and encouraging.

The gab fest lasted for the rest of the 30 minutes and at the end of the meeting, I was exhilarated that I had come and so sad that it had to end. They are doing an event this summer, an annual telethon which Norio and I both signed up to participate in. I think it helped Norio as well, interacting with other family members and people that actually could understand the emotions he goes through on a regular basis.

The group meets again in 3 weeks and I’m so excited to go. It’s the best thing that has happened to me in Portland so far and I’m so glad that we went.

If you ever have the opportunity to hit up a sickle cell group meeting, GO! There is so much to gain from interacting with others that are on the same level as you in this situation. Try it out, even just an online support group. You won’t regret it.


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