Help! : I have no one to talk to about lupus!

This post was inspired by some of the emails I get from readers. I love getting mail from you guys, but often they say similar things. In this new series, I’m going to give my two cents on some of the most common lupus questions I get. Have a question? Use the form on my Contact page and write me!

One of the most common things I hear from my readers sounds a bit like this:  I don’t share how I feel, I don’t know anyone with lupus, my family doesn’t understand, I have no one to talk to…

Living with lupus is hard, both physically, mentally and emotionally. I think the mental and emotional parts are often even harder on our lives than the physical stuff. I’m not a shrink (I barely bounced out of my college psych class with a C), so everything written here is strictly from my own experience (as is everything else on this blog) and should be taken with the required Siberian salt mine.

Lupus is a very isolating illness. If you get it early in life, like I did, then you grow up seeing everyone else living a life you can’t touch. If you get it later, then you see yourself becoming someone else, someone you probably don’t want to be. You’re different, both inside and out and that’s a hard thing to be. Everyone with lupus changes, because we all have to find new ways of making our lives work.

And if that was hard enough, the bad news is: not everyone is going to stay with you through it all. A lot of people just don’t have that strength. They will get restless and angry that you’re moving at a different pace. They’ll assume that you’ve turned into glass and stop inviting you places. They will yell hurtful things at you, accuse you of lying, being lazy or being crazy. They will throw the stupidest health advice your way and then get mad when you don’t take it. They won’t visit or call you in the hospital. They will run away and be relived that they don’t have to deal you anymore. These will be your friends, lovers, spouses, children and family. And it will hurt.

If there’s one thing I’ve learned about people in my lifetime is that we all want comfortable lives – emotionally comfortable, I mean. We don’t want to feel foolish, useless, helpless, or stupid. And when someone you love has lupus, this mysterious, unpredictable thing, those people are going to feel like foolish, stupid, useless and helpless. How can they not? They don’t feel the pain, they hear you complain about it. They don’t experience the endless rounds of tests, the avalanche of medications and how crappy it is to wake up every single morning with a new side effect or an old pain. They feel useless because they can’t comfort you. They feel helpless because they can’t save you. And they feel stupid because there is no way they can understand what you’re going through. So, they run, they distance themselves, so they don’t have to feel that way. If you can, try to forgive the people who run and don’t hurt yourself trying to keep them comfortable.

Now that I’ve finished depressing the hell out of you, here’s the good news: you don’t have to be a complete hermit. Don’t let the people who can’t handle you scare you away from finding the ones who can.

Online lupus groups are an obvious starting point. There are a lot of forums for chronic disease patients to swap tips and vent. Ask around and see who’s in your area. is another idea – and if there are no events in your area, you can create a lupus mixer event of your own.

Lupus events are another place to meet other lupies. The Lupus Foundation of America has chapters nationwide, and hosts events, so it’s a great place to start. If the LFA doesn’t have a chapter near you, check your nearest major hospitals and see if they are hosting any educational events.

Follow your passions. Just because you have lupus doesn’t mean that you have to give up all your favorite activities – you might just have to modify them. Try taking a class to rekindle a new spark with an old hobby and meet others who love it too. Or, join a group for something new.

Volunteering can help you learn new skills, give you perspective by helping others and give you the chance to meet people from all different walks of life. It can also be a really flexible and accommodating hobby, making it a great fit for lupies.

Believe it or not, therapists aren’t for so-called crack-pots. Therapy can be a great venue to vent your fears and frustrations and get supportive feedback from a healthy source.

Having lupus (or any illness) should not and does not mean you’re alone. While all our experiences are unique we all have similar issues, fears and hopes. If you’re feeling hopeless about your situation and start thinking of suicide, seek help. The number for the National Suicide Prevention Hotline is 1 (800) 273-8255.

3 thoughts on “Help! : I have no one to talk to about lupus!

  1. My name is Chelsea Stark. And I recently was diagnosed with lupus. I just started a blog titled lupus my invisible companion and I’m looking for people to share some life stories. And some vitamins for exercises or prescriptions that help them. The goal of this blog is to help other people with lupus and maybe educate those who do not have it. Here is the link.

  2. When I was first diagnosed, I reused to seek help from a therapist because I viewed them just like you said for people who are “so-called crack-pots” and I thought that by having one I was calling myself “crazy” and I didn’t want to be considered that either. But, after sometime and actually going to a few sessions I learned that it is quite refreshing to have a place to vent and seek an outside opinion that isn’t biased or telling you something because they know your “emotional or mental” state. I recommend them for anyone even those who aren’t suffering from any emotional distress.

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