Isolation Goes Beyond Being Unable to Attend Events 

Living with a hidden disability can be isolating and lonely. Here’s how I address the challenges while finding support and setting boundaries.

Have you ever been in a room full of people yet felt alone? I have many times.

I remember being at a birthday party during a horrible summer downpour. My psoriatic arthritis (PsA) was flaring at the time, but the humidity and low pressure system made things worse.

I was trying to keep it together, but I knew I came off as rather anti-social. I felt separated from all the people in the room, my mind drifting from pain and only occasionally picking up on the conversation being had right in front of me. And the worst part? There wasn’t anyone there who I felt comfortable to ask for help.

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Isolation goes beyond canceled plans

Having a hidden disability and chronic pain can be incredibly isolating. Many talk about how missing events and canceling plans make them feel unreliable and degrade friendships. It hurts when the invitations dwindle and stop, and you lose friends.

But the isolation doesn’t start and end with canceled plans. It extends to being unable to be fully present when I go out because the plans and the world can’t always accommodate my needs. It also extends to finding it hard to keep in contact with others or that others can’t be supportive in the ways we need. There are so many different factors.

I don’t enjoy myself

When I can attend events, arthritis can make it hard to feel truly present. I’ve sat through my fair share of concerts while everyone around me danced because I was so tired and in pain. I’ve also had plenty of family gatherings when I counted the moments until I could return to the car and recline. Big and small events can be draining.

Preparing for the day, working long hours, detours, changing plans, unexpected weather changes, and peer pressure to go with the flow can make even the most well-thought-out plans difficult to cope with.

Making plans that work

When most people think of accessibility, they think of wheelchair ramps. Adding the word “arthritis” to accessibility might also bring pencil grips and buttoners to mind.

But when I think of accessibility for myself, I think of having my own way home, taking appropriate breaks, and having flexibility in case I’m not feeling great. Setting boundaries is essential, such as being clear that you must take things slow or can only be out for so long.

I have started prioritizing my comfort and enjoyment for special days out by using a wheelchair if a lot of walking is involved. It has allowed me to sincerely enjoy my days at theme parks and museums and be present. Admittedly, I’m picky about who I spend these days with. I won’t go out with people who will make me feel guilty about my choice.

Through the years, I’ve also started doing a lot more hosting. It’s been a lot easier than making plans. Ordering takeout, watching movies, and playing board games in the comfort of my own home has been a game-changer. It’s worked out much better than meeting up, even at other people’s houses.

Low social battery

I struggle with being social when my energy is zapped. It can be hard to want to hang out or even talk on the phone when you’re not feeling well. There have been periods when I find it hard to keep in contact with others. When my pain is high and my energy low, everything sounds too much to handle.

It’s even more complicated when life gets busy. Holding down a job, family emergencies, and other significant events can take a physical and mental toll. So, there are times when texts and emails sit in my inbox for a while. It’s unintentional, but sometimes you only have so much room on your plate.

I also want to acknowledge that keeping in contact can be incredibly difficult if you’re also living with depression or anxiety.

Find a good balance

Some friends can go months without talking and pick back up like no time has passed. But not all relationships work like this. I encourage you to keep in contact with friendships you value and find easier ways to do so. Even sending memes helps maintain a connection!

I have friends with whom I don’t text often, but we get on calls every few months to catch up and enjoy each other’s company. I appreciate the quality of our connections.

A lot of people understand when communication starts to fizzle because we’re all busy dealing with our issues. Try not to feel guilty if that happens. Just reach out and explain — you might be pleasantly surprised and well received.

No one understands

It’s not easy to live with an autoimmune disease, but it’s even harder when your loved ones don’t understand. It’s discouraging to hear, “It’s not that bad,” “I have pain too,” and “If you’d just do ____, you’d be fine.”

It’s isolating to know there is such a big part of my life that I can’t talk about. When you’re doing well, it’s not a big deal. But when you do need support, it gets very lonely.

There have been periods in my life when I felt utterly alone in my journey. I remember a very vulnerable time when I was without healthcare. I told a loved one how frustrated I was and how much I felt like I was struggling. They were annoyed and said, “Just do natural remedies.”

Set boundaries and find other support

If this is the scenario you are in, first of all, I’m so sorry.

It’s important to have boundaries with loved ones who can’t be supportive. Choose not to discuss your health with them and instead focus on other topics. When I did this, it gave me a sense of control and even peace within the relationship.

While there’s no substitute for a supportive spouse, parent, or friend, having a therapist and support groups can help. Online communities like Bezzy are great places to get started. You can find in-person groups through the Arthritis Foundation, local hospitals, libraries, and community centers.

For the friends I do have who are understanding, I still try not to overdo the venting — I respect that it can be stressful for them, too. I also want to be a safe space for my friends, which also means making sure they can vent to me.

Final thought

I wish I had more tips and tricks on this subject, but this topic is highly subjective. Everyone’s experience will be different, depending on the people in your life, your social preferences, and your current condition. My biggest takeaway is that arthritis can isolate you in more ways than you would expect, but try to be vigilant in fighting the loneliness.

Please, fight against it as best you can. Even if professional support is your only support, it’s a good start. Everyone has to start somewhere.