Why I Won’t Talk About My Health with Family and Friends

When family and friends don’t respond well to what you share about your health journey, it’s disappointing and hurtful. Here’s how I determine my inner circle and respect my own boundaries.

A few months ago, I was caught off guard by someone asking how my psoriatic arthritis (PsA) was doing. They had heard my health wasn’t doing great and wanted to check in and offer a recipe for a home remedy. While I appreciated that they cared, I was also surprised they knew about my flare-up: I generally don’t discuss my health with family and friends.

It sounds a little ironic, considering I write about my experiences living with PsA. But hear me out: It’s so much easier to share about my life with PsA with a community that “gets it” than to talk about my health with those who don’t understand.

Even though family and friends are often the first place we turn to for support, this group isn’t always the most empathetic. For this reason, I’ve decided to keep my health details private, aside from a few close loved ones.

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When others don’t understand

I didn’t completely stop talking about my PsA to my loved ones, but only a few select people know what’s going on with me.

Like many other chronically ill people, I have had partners, family, friends, teachers, co-workers, and random people not hesitate to pass judgment (or criticism). It’s tiring to hear unending advice or accusations that I’m not doing enough to get well.

It’s annoying to encounter someone who wants to compete and see who has it worse. But what’s most heartbreaking is when someone you love invalidates or dismisses your struggles. So, I stopped opening myself up to it.

With certain people, I’ve learned that it’s better to avoid the topic altogether or say only so much. For some people, it hurts not to be able to share, but it’s a lot easier than dealing with remarks or unsolicited advice.

Finding my inner circle

Lots of us get our hearts broken the first time we share our struggles with someone we love and get rejected. It helps to dip your toes in the water to assess who to trust. It can be scary, especially after a bad experience, but you’ll never know who to confide in otherwise. And you may be pleasantly surprised to find out how supportive people can be.

Naturally, there are people you might not want to open up to at all because it doesn’t feel safe or worth it. And that’s OK — you don’t have to share with anyone you’re not comfortable sharing with (even family, in-laws, and friends).

With those you want to share with, it’s OK to “test” out how it will go. I’ve succeeded in slipping it into a conversation. For example, while talking about hobbies, I said, “I prefer walking on packed paths to hiking because it’s easier on my joints.”

It can be intimidating to bring up the topic when you don’t know how someone will react. It’s hard when someone is dismissive, invalidating, or otherwise negative. But it’s essential to move on and focus on who you can share with, even if it’s only one other person, a therapist, or within a support group.

When PsA crashes the conversation

There are times I can’t avoid talking about my health. Despite having an invisible illness, there are days it’s very apparent. I can look pale and tired when I’m in a flare or seem a little distressed and fidgety when my pain is high. Or, it might just come up randomly in conversation.

I usually try to steer the conversation in a way that makes me feel comfortable. That could range from saying, “I’m fine,” and changing the subject to sharing a small glimpse into my reality, like revealing, “I’ve been in a little flare, but I’m feeling better now, thanks for asking.”

There also may be times when I need to enforce a boundary for the sake of my health. For example, “No, I cannot participate in this activity because it aggravates my joints.” Just be clear and firm — no need to overexplain or justify.

Sometimes, people surprise me and seem to care genuinely. I love it when that happens.

When I get a dismissive response or am overloaded with advice, I try not to let it bother me too much. I remember that some people can’t empathize until they’ve been through the same thing. I also keep in mind that many people give advice in an attempt to help, even if it’s unhelpful.

So, who do I share with?

I have a few people in my life with whom I can truly share, and I’m incredibly grateful. They make me feel safe. I try to reciprocate for them and not put too much on their shoulders. We’re all only human, and relationships go both ways.

I’m not ashamed of my PsA or how it affects my life. I will advocate for people with psoriatic disease until I’m blue in the face. And I am especially happy to share with anyone who will treat me with kindness and respect.

But picking and choosing who gets to know about my health and just how much has dramatically improved my mental health. Not only do I avoid unnecessary negativity, but it gives me a sense of control: I might not be able to control my PsA, but I can control what others know.

Above all, this is the best way to show myself kindness and respect. I reframed my thinking that only people who truly love me are privileged enough to know what’s going on with me. It’s also comforting to know I am not alone in any of my struggles with PsA: I have an online community where I can turn to for support.

Respecting your own boundaries

Regardless of your reasoning, you don’t have to share anything about your health with anyone. Your health is private and personal, whether or not your illness or disability is hidden. No one is owed an explanation, not even family.

You are never obligated to answer overly personal questions or speak about your health to people you know would shame you, gossip to others, or one-up you. It can be uncomfortable at first but is freeing in the long run.

As a patient advocate, I encourage you not to share your diagnosis unless you are 100% comfortable doing so. While talking about PsA and spreading awareness is great, it doesn’t have to happen at the expense of your privacy and comfort.