Ask the Community Members: Relationship Management With PsA

Last updated: December 2022

Relationships. They look different for everyone. They require communication, honesty, and connection. Relationships enrich our lives with support and understanding. Relationships are essential when navigating the heavy load and emotional toll of a chronic condition like psoriatic arthritis.

Relationships can look like chosen family, life-long friends, trusted co-workers, and dear loved ones, however, you prefer to define them. The goal of a successful relationship is a shared and safe space to be your authentic self completely.

Sharing the true impact of psoriatic arthritis with others

Sometimes family members and friends don’t understand. We can’t blame them. Unless they receive a diagnosis, they will never be able to process the true impact of living with this unique chronic pain condition.

Vulnerability and shame can sneak up in our hearts when revealing a particular challenge unique to psoriatic arthritis, especially when we’re not met with compassion or sensitivity. Even so, every person’s journey with PsA is their own.

It’s why this Ask the Community Members articles series is so important. We wanted to highlight the voices and novel experiences of our dedicated community members. It is these community members that truly understand the pressure, the inevitable guilt, and the lack of emotional support that loved ones just can’t seem to grasp.

Even though they say they understand, they don’t quite

“Seldom. They brush it off. Even my spouse, who says he understands and feels for me, then asks when dinner will be ready. Other family members and most friends try to understand, but it is easy to tell they don't.” – Rosah

“My wife sees the effect daily. She completely understands as she has had ME for over 35 years. My mother and sibling don’t understand it at all. I have explained it to them, and although they sympathize with me, they think I can just carry on and push through as ‘you don't look ill.’” – Greg

I get very specific in describing PsA pain

“I've actually just begun sharing the true impact of this with close family members since last year. When I had failed 3 B-DMARDS, and I was experiencing a flare at a rate of 1 every 60 days, it was becoming tough for me to maintain control of my mental state daily.

I was snapping at everyone and lashing out at loved ones; I was horrible to live with due to the pain and ​​uncertainty. So, I had to lay out just how bad things were going and how uncertain my own doctors were about things. I finally got particular in describing the kinds of things I was experiencing. Like, how the pain can hit completely out of the blue, like someone striking my knuckles with a hammer.” – Eric

It’s too much to share everything

“My husband knows the brunt of my pain. But I don't share it all with him because it is too much. My children and parents know about some of my pain, and I share it on Instagram and Facebook every once in a while to grow awareness because it took over 20 years of pain to get a diagnosis for me. I don't want others to suffer that long.” – Dedra

"While I have supportive people, I keep a lot to myself. My husband can usually tell just by watching me how bad the pain is, but I often fake it. Very few know how much PsA affects my daily life. Even a morning shower can be an exercise in endurance. Can people who don't have PsA understand? I think many try. And mean well. But do they truly understand? Probably not." – MaryLynn

Spoon theory to describe life with PsA

Some people with chronic health conditions use a tool called spoon theory to explain to others how chronic pain impacts daily life. We asked community members: Do you follow the spoon theory? If not, do you use a different way to assist others in understanding the impact of PsA? The opinions are mixed! Here’s what some had to say…

I’ve found it easier to compare PsA to their own experiences

“I do not follow spoon theory. The best way I have found of communicating to others the impact of PsA on my life is to ask them to remember that time they had COVID simply and couldn't get out of bed for a week due to the tiredness; or when they fell out of a tree and broke several bones, and had to take painkillers for several weeks. I only ever explain the impact of this disease to people who know me well and who I, in turn, know well.

When one of my brothers had relatively mild COVID-19, he was telling me how he would get up in the morning, get dressed, and eat breakfast, and before he even got around to trying to do any chores, he was so drained he had to go back to bed. And he told me his whole body ached so bad it reminded him of what he felt like the day after a hard football game in high school. I listened to him, commiserated, and said I hope he gets better. And when he got better, I told him to remember how having COVID felt, and I said to him, ‘That's how I feel every single day when I have a flare. And that can happen several times a year.’" – Eric

It’s a helpful graphic for invisible diseases

“I use the spoon theory with my kids to let them know I am out of energy. I also share on social media because it is a powerful way to explain this invisible disease. Using the spoon theory even helps me understand what I'm going through. It is powerful to see a graphic about it.” – Dedra

I’ve given up trying to explain PsA

“I have used the spoon theory, but I’ve sort of given up explaining to some people as no matter how I describe it they just don’t seem to grasp the concept. Even when I explain psoriasis as being skin growth that is 3 times faster than normal so building up the plaques … one friend said, ‘Oh, so like nappy [diaper] rash then!’ … I sighed and walked away.” – Greg

Setting new boundaries after PsA pain

Managing life with psoriatic arthritis is more than a physical journey. It’s an emotional one too. Those who live with this chronic condition have to learn how to cope with their newly formed limitations and find a new sense of independence. It is a trust test in resilience and determination.

It takes enormous courage, a lot of self-talk, and a touch of self-acceptance to communicate what a person needs.

Listening to your body, understanding what it needs, and then communicating that too precious people in your life – well, it’s one the most difficult things a person with psoriatic arthritis must do. Boundaries can be freeing and an opportunity to connect and offer a realistic glimpse into life with PsA.

It’s hard to set boundaries, but we are learning

“I think the main boundary I have had to set is not having great-grandchildren do overnight visits. Now they must go home with their parents while I collapse on the sofa to recover from their visit. The parents understand. The grandchildren don't. They continue to ask to stay over, thinking I should be well by now. I feel guilty. Time with grandchildren is precious.” – Rosah

“I no longer feel the need to say yes automatically. I listen to my body; if saying no is needed, I say it. Although, I'm still uncomfortable with the 'I don't feel well' excuse. I usually make something up or use a less important reason other than 'I'm sorry, I don't feel well today.' That seems easier.” – Dedra

“I am horrible at setting boundaries but learning. I am a 'people pleaser' by nature so this is hard for me. We traveled to see extended family this summer. The travel alone left me gasping. Some family members were hurt when I declined invitations, but I made a point to gently let them know that it wasn't something they did. I wasn't ignoring their invites. I explained briefly that my chronic, progressive, painful disease has changed what I can commit to. And what a gift when people understood!” – MaryLynn.

“I have probably socially withdrawn quite a bit due to my PsA. It has happened gradually over the past 8 years. I maintain it because I see it’s the only available option. My immediate circle has come to accept that, even if I haven’t fully yet.” – Greg

Ready to share your story with others who understand?

Psoriatic-Arthritis.com is a community that understands when it seems like loved ones don’t. We aim to offer a safe space where individuals feel comfortable sharing their experiences in ways that work for them.

Psoriatic arthritis consumes so much of your life. No rule says you have to go it alone. We’re here for you.

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