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Experiencing Social Anxiety With Lupus

I have previously written about the effects depression can have on us lupies but I wanted to talk about another aspect of mental health that can also affect us. It is a form of anxiety but specifically when we are in social situations.

This condition is known as social anxiety disorder or social phobia, and just like generalized anxiety, it can affect anyone. Due to my personal experiences, it's something that I have noticed has affected me a lot over the years. I believe that having lupus has been the main reason why I have struggled a lot.

Social anxiety is a condition where you are fearful of social situations and interacting with people. It can affect people in a debilitating way.

My experience with social anxiety and lupus

I used to be a fairly confident person pre-lupus, and although I've never enjoyed public speaking, it would never be much of an issue, but I noticed once my health declined, I found myself struggling.

The first hurdle would be when friends would invite me out, especially in the early days of illness. Previously this was something I wouldn't have to think about! I'd be glad to go out and socialize, but now it would be faced with a feeling of apprehension and worry. Who else would be there? How long do we have to stay? These are just some of the questions I'd be asking in my mind. I usually end up declining the invitation as I'd much prefer to stay at home where I felt safe and comfortable.

Another problem I still have is the worry of being somewhere, and I suddenly feel unwell. This has happened to me a few times, and it's a horrible feeling. It left me feeling incredibly anxious about going out afterward.

Often with social anxiety, it’s the fear of judgment that can set it off. In our minds, we are conjuring up all kinds of negative scenarios, of course, and a feeling of being self-conscious. I think having the worry of people asking what job you do when you have a chronic illness is always difficult.

Physical appearance is another trigger for social anxiety. I had gained weight due to being on steroids, so this was an extra issue! I would worry that this would attract negative attention.

Also, when we have a chronic illness such as lupus, if we have to attend an event and we aren't feeling well, it can be a huge effort just to make conversation, especially with strangers. I find this so draining to my energy levels.

My social anxiety test

I had a big test recently as I had to take my 4-year-old daughter to her friend's birthday party. I didn't know anyone else who would be there, so I spent the entire week feeling horrendous anxiety before it.

It got to the point where I considered not going, but I pulled myself back and realized that it's not fair on my daughter if she has to miss out. I managed it, and I got through it! I was so glad I didn't cancel as it was totally fine, and I even got to talk to a couple who both suffer from the same problem!

Tips for dealing with social anxiety

I have found the following to be helpful if you're dealing with social anxiety:

Open up about it.

I haven’t talked much about my social anxiety until recently. My partner was actually shocked as he thought I didn't have any issues in this area. I was obviously hiding it well.

Take the focus off yourself.

Try to direct your attention to something else rather than focusing on yourself.


Learn to slow your breathing rate down by taking slow deep breaths. Meditation is great for this too.

Set yourself a limit.

Depending on the situation, you can give yourself a time whereby if you feel you are struggling either physically or emotionally, you can simply leave. At least you've made an effort and taken part. That's a big achievement.

Stop negative self-talk.

Replace it with positive. Get into a habit.

Change your mindset.

Focus on situations where you have been anxious about a social situation, and it's turned out positively.

Just be kind

We just have to be kind to ourselves at the end of the day. I’ve learned to have self-compassion and be accepting of my worries and fears. It's a journey I'm experiencing, and some days are good, some are bad, but I'm doing my best, and that's all that matters.

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