Necessary Support

There are all different types of support, but I've found that my local Lupus chapter's support group is necessary for me. I know not everyone likes support groups. However, it works for me. It only meets once a month, and I love being able to spend time with people who really get it. While my husband, family, and friends try to understand (and are amazing), there's nothing like hanging out with people who are dealing with the same issues. I've also made some good friends.

Each month, we have a topic that we focus on and chat about (plus we catch each other up on what's new in our lives and get to ask questions). This past month, we had two new people, which is always nice when there are new faces. Even though I said it's nice to have someone who understands, we don't all have the same issues. For example, most of the people who attend the group I go to have systemic lupus (so, it can involve the whole body). There are at least two people who have discoid lupus (the type that Seal has - it involves just the skin). Still, we are on similar medications.

My husband comes when he can (he works probably half of the time), and I think it's helpful for him not just as the spouse of someone with lupus but also since he is a nurse. He said that since we started dating (and more so after he started going to the lupus group and getting to know the people there), his patients with lupus are some of his favorites. While his floor is more of a stroke and telemetry floor, lupus patients can end up there either because of those things, or if there are empty beds, anyone can end up there.

If you have lupus, check to see if there is a chapter in your area - they probably offer support groups. If you aren't into support groups, it may be worth talking to your local chapter to see if they offer anything that can help you. My chapter has had pamphlets I've used to help explain lupus to people, and they have given me lists of the names of doctors. Their patient navigator (Leslie, if you're in Ohio) is amazing! She also runs the new patient education classes, which I haven't been to (I've been diagnosed since I was 10) but I have had many friends attend and say it's very helpful.