How to Find Support When You’re Diagnosed With Lupus
Anna shares why it’s important to find support when diagnosed with lupus, how to find these support groups, tips for finding support, and more.
It can be really difficult to find people who know exactly what you’re going through. And if you’re watching this and you have lupus, I’m sure that you’ve heard it all.
People say, “Oh well, we’re all tired, “everyone feels sick, just push yourself.” And it can make you feel isolated. It can even contribute to things like depression or make you feel even worse about your situation.
One of the best ways I’ve been able to find support is simply by going online.
You can meet people from all around the world that suffer from lupus SLE without every having to leave your house, which is perfect for those of us with lupus, especially if you’re having a flare. Then you can rely on someone for support without ever having to leave your house.
This is great because you can always post on a lot of these forums. Sometimes they’re forums, and sometimes they’re on Facebook. They might be by different means.
You can post day or night, and you’ll always have somebody who will come up and be able to lend you support and talk to you.
You might be able even to form some close friendships with people, which, if you’re not super into the internet, it may sound a little bit weird, but you can foster close relationships with people that you’ve never actually met offline.
Hospital Support Group
Another way that you can find support is by your hospital. The hospital that I went to in New York City that treated my lupus had a support group running for young women with lupus SLE, and young men as well. It was incredible.
I got to connect with so many young women with lupus, in person. We met twice every month and we got to just talk. Then we started scheduling social outings and things like that.
The only people that know what you’re going through is other people with lupus. So you really need to find a way to connect with other people who have lupus.
Family and Friends
As far as generally seeking support, I think it’s really important that you have understanding friends and family members.
You will always have people who are not going to be understanding, people who are going to be rude to you, people who are going to have their feelings hurt because of your lupus and because you have to stop doing things or you have to quit an activity, or you have to flake out.
And people are going to be upset. But it’s important that your friends and family are supportive.
It’s important to kind of ditch those more toxic people that are not going to be as supportive of you as the people who are going to be supportive of you.
So this may mean that you’re going to have to ditch the friends of yours that make you feel guilty or are not very kind to you, because you need to really focus on yourself, your health, and being with people who support you 100%.
Sometimes your family may not support you 100% or may say negative things to you. That doesn’t mean you need to cut off your family completely; it just means that you may need to limit the time you spend with that particular person.