Coming Out to Loved Ones About PsA

Here’s how to get the support you need and accept what friends and family can offer. 

If you’re anything like me, after receiving a diagnosis of psoriatic arthritis (PsA), you may have spent some time vacillating between shock and relief.

Relief, because you finally had a name for a collection of symptoms that once seemed unrelated; shock, because it takes some time to get your head around the fact that you are now dealing with a chronic illness.

And this all gets a bit more complicated when you come out to others about your PsA.

Many people in your life may never have heard of this illness or may confuse it with rheumatoid, osteoarthritis, or other autoimmune diseases.

Telling loved ones about PsA can become a stressful experience. It may include answering a barrage of questions, dispelling misinformation, or even comforting your listener.

These scenarios might eclipse your own need for support. But there are ways you can thoughtfully direct these conversations.

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Be clear and share resources

It’s important to explain what PsA is in easy-to-digest terms. Consider beginning with the basics: How autoimmune diseases work, what your symptoms are, and even what treatments you’re considering.

Remember, resources that you have found helpful in the past may offer language to help you explain PsA in easy-to-comprehend terms. These resources could also be good resources to share with your listeners.

I particularly like the straightforward and clear descriptions of PsA symptoms in this Healthline article, and also found helpful information at The National Psoriasis Foundation and The National Institutes of Health.

Direct the conversation as much as possible

Some of the most well-intentioned people in your life are going to go beyond compassion and dive headfirst into pity. “Oh no!,” one friend said when I told her about my diagnosis. “This is terrible!”

Be careful not to take this on, and not to respond by comforting your listener too much. Instead, use open-ended questions. These can redirect any fearful reactions back to critical thinking.

You might ask, “Are there any specific questions you have for me?” or “Do you want to know what I’ve learned about my condition?”

Remember to set boundaries around the questions you’re willing to answer and be clear about what you feel comfortable being asked. One way to keep the conversation open is to ask, “Would you like to know what you can do to support me right now?”

These kinds of questions are usually a relief for your loved ones, since they may never have had a conversation quite like this before. So while you might need reassurance, you might have to occasionally offer some as well.

Accept that some people might not get it

Pity doesn’t feel good and neither does insensitivity, but you’ll want to prepare yourself for that too. For instance, I have had good results from maintaining an anti-inflammatory diet (mostly giving up red meat, gluten, and sugar).

When I told my brother that I could manage my PsA flares by changing the way I ate, especially avoiding alcohol, he said, “Okay. Well, let me know when you can have fun again.” Not exactly the sensitive response I had hoped for.

So be prepared for misunderstandings, especially when it involves any changes in your diet or exercise routines.

One friend was worried about a chicken salad she wanted to serve me, because, as she put it, “You can’t have mayonnaise, right?” Um, no. That’s not right.

While it may be frustrating at times, you might have to remind your loved ones about what you need, and what’s a helpful response.

Accept help when it’s offered

Sometimes the hardest part of having a chronic illness is feeling weak or feeble, and that can keep us from asking for help when we need it. Research suggests that asking for help benefits both parties in the relationship.

Being able to help a loved one feels good, because although we may not be able to do anything about their health condition, we might have a concrete way to make them more comfortable.

Or make living with that chronic condition easier. Accepting help is good for your relationship overall.

Be honest about what you can do and what you can’t

Because PsA symptoms can “wax and wane,” you may not be able to open a jar on your own one day, and not need any assistance another.

Some days you might go on an all-day hike with friends — another day, a long evening walk might send you hobbling to the bathroom in the morning.

This is understandably hard for others to conceive, so you’ll need to be clear about when you’re having flares and when you aren’t.

Likewise, loved ones might be worried that you won’t be able to do some of the activities you enjoyed together in the past.

While this may be true sometimes, the very nature of PsA is that there are times when it flares, and times of stasis. You will most likely be able to do some of those shared activities some of the time.

You might say, “This doesn’t mean our relationship is going to radically change, but there may be times when I can’t show up the way I want to.”

Verbalizing this has the potential to comfort both of you in this case, and could open up a healthy, supportive dialogue when planning future excursions, especially if you need to bow out or change what you can do.

Celebrate those who “get it” and spend regular time with them

Having a chronic illness can be isolating, so finding others who understand your condition is vital.

While sites like Bezzy can help you find community support, make sure to embrace those relationships with loved ones who understand your condition and want to help.

I have friends who know I need to avoid high impact exercise, so they take long walks with me. I also have a friend who makes an effort to cook anti-inflammatory meals and desserts I can enjoy.

One friend bought me silicone pads to help with opening jars on the days my hands feel especially sore (and one handy cone to help with screw-off bottle tops!).

Once you’ve come out to your loved ones about PsA, you’ll know who can show up for you this way. Make sure to nurture these relationships: They’re good for your health and well-being.