3 Helpful Tips for Caring for a Loved One with Psoriatic Arthritis
Last updated: June 2023
Psoriatic arthritis is a difficult condition to live with. There's no doubt or arguing that. However, I sometimes think that caring for someone with PsA can be just as difficult.
I often wonder if the roles in my marriage were reversed. What if my husband had PsA instead of me? What challenges would I face? How would I deal with the helplessness that comes with loving someone who lives with a disease that is incurable, incredibly painful, and irrationally unpredictable?
The impact of caring for a loved one with PsA
With or without a chronic condition, the expectations of daily life can feel insurmountable. We can talk about the physical expectations of daily life, you know, those household tasks, daily chores, and important errands. One physically strong partner may have to take care of this load because their spoonie partner cannot.
What's interesting and goes unnoticed is the emotional toll of being a caretaker or partner of someone who lives with PsA. It's this person that has to watch someone they love, someone they care about deeply, in pain, struggle with fatigue and be dismissed by their doctors.
So, what can you do to help?
I’ve written in the past about things, big and little, that my husband and friends can (and often do) that make my life a little easier as I manage the pain caused by psoriatic arthritis. I’ve even listed some things that I can do, as a patient myself, despite my disease, to even out the scales to reciprocate a little.
However, caring for a loved one with psoriatic arthritis can be especially challenging, so here are a few tips to help those of you out there who feel a little lost, helpless, and looking for a few hopeful changes.
Pre-made meals can do wonders
You never know when a flare will rear its ugly head. More often than not, by the time dinner rolls around - even without a flare - many of us with PsA are simply too exhausted from fighting our pain and fatigue all day that dinner feels like an insurmountable task. So, the answer is to simply eat nothing.
Or we have to resort to fast food or prepackaged meals filled with preservatives simply because they are the easiest despite the fact that they often make our symptoms worse. Having a relatively healthy meal where all we have to do is pop it in the oven for ourselves or our family can be more helpful than you can ever imagine.
Gently suggest gentle exercise or movement
One of the difficulties of managing life with psoriatic arthritis is that if you don’t flex and move your joints often enough or in the right ways, you can actually be in more pain. For me, it often pays to gently push past that initial pain or discomfort on movement to “grease the wheels.”
But I’m always better about it if I have someone encouraging me or holding me (gently) accountable. It can be difficult to know when to be encouraging and when to know that rest is best - there is a fine line. However, simple encouragement, accountability, and a friend to move with can make moving a painful body much more bearable.
Tag along to a doctor's appointment!
With the speed at which we get cycled through most of our doctor's appointments these days, it is difficult to process new information and get our concerns addressed. This also includes the aftermath of processing the appointment and trying to recap and understand what was discussed.
While I often take a little notebook with me because (duh!) of brain fog, occasionally having another set of ears to hear what the doctor is saying and providing support can be very helpful. Simply getting to and from our appointments can be draining, so having someone else there to take the wheel is a great way to show you care.
What has someone in your life done to show that they care about you lately?
The lack of control that we as people who live with psoriatic arthritis face is one thing, but it's another lane of helplessness compared to how it must be for those who care for a loved one with psoriatic arthritis, having to watch it all go down, unable to make it better.
But honestly, when it comes down to it, showing someone you care doesn’t take a ton of time, money, or energy to be kind and helpful. Share your own tips below. You never know when someone is uncertain how to help you and in need of a few good tips and inspiration!
This or That
Do you experience enthesitis alongside your PsA?
Has PsA changed how you think about sex and intimacy?
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