How To Combat The Isolation Of Your Autoimmune Disease

36708805 - view of woman can't sleep during nightOne of the really not-so-fun things about having an autoimmune disease is that a lot of people just don’t know what it is. They don’t believe you really have a disease. They think the pain & fatigue isn’t real. They may even simply think it’s “all in your head” or “you just need more sleep.” (Don’t you hate it when people say that?!) As much as you may love your neighbors and relatives, there are probably some people in those circles who just don’t understand what you’re going through at all.

Because people have such a difficult time understanding your autoimmune disease, chances are there will be times when you feel isolated. This can happen because other people can’t relate to what you’re going through, but it can also happen because you close yourself off from those around you. It can be difficult to deal with an autoimmune disease. These kind of illnesses can be time-consuming, disheartening and destructive to relationships. Regardless of the reason, there will probably be times in your future (or present) where you just feel like there’s no one to turn to. You may think that you’re completely alone on this journey. And although that’s not actually true, there are times when we’ve all felt that way.

Having an autoimmune disease can be isolating. So what can you do to keep that pesky isolation away?

First, set yourself for success up with a support group full of people who get what you’re going through.

A support group should be your go-to resource to combat isolation. Your doctor might have been able to set you up with a local group when you were working through your diagnosis. Some groups may even meet as much as once a week. These can really come in handy when you need that physical comfort from someone else who gets it. However, a face-to-face group probably isn’t realistic for everyone who is dealing with an autoimmune disease.

This is what online support groups are for. And they can be your rock when you just can’t do it alone! Online groups are a great place to ask questions, vent your frustrations, and just find people who get you and your journey. Through support groups, you will be able to connect with people. This really is a key when you start to feel isolated from the world around you.

Second, be sure to talk to someone about your feelings and what you’re going through.

If you’re like most of us, you may find yourself shutting down and turning inward when you become frustrated with your autoimmune disease. It can be really easy to blame yourself for not being good enough at handling your disease and having off days. You need to find someone who you can confide in.

This may be your significant other, friend, sister, mother, neighbor or just Joe Blow off the street. But you do need to find someone who you can talk to. They don’t have to completely understand it, but they need to be willing to listen. If you don’t know of anyone who you can talk to, consider a therapist, coach or religious leader to help you. There are plenty of people in you life who are willing to help. The real challenge is getting up the guts to admit that you need to find someone to talk to.

Third, be patient with yourself and the people around you.

Having an autoimmune disease is not something that anyone is especially good at handling. So it’s totally fine to admit that you have a long way to go. You can be totally okay, even if you have a rough day (or twelve). Be patient and understand that this is a learning process. Also keep in mind that it’s a learning process for the people around you. If they aren’t understanding your situation, help them. You can learn together. It’s not worth the isolation that can come from being upset with yourself or the people around you for not knowing how to handle this situation.

Having an autoimmune disease can be isolating. But it definitely doesn’t have to be. Through all of the pain & fatigue that come with these diseases, there are ways to connect with the people around you. After all, you’re going to need all the support you can get on this journey.



About the Author
Katie Cleary is founder of  She lives with her autoimmune conditions and her family in Austin, Texas.

This post contains opinions of the author. is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy



  1. Linda Bailey says:

    Wonderful article

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