Community Views: Emotional Support While Living With Psoriatic Arthritis
When talking about the pain of living with psoriatic arthritis (PsA), we do not always mention the emotional support we need. Receiving emotional support is very necessary along the PsA journey.
When overlooked, a lack of emotional support can lead to further fatigue and feelings of isolation or burnout.
Defining emotional support
One challenging aspect of this diagnosis is that many of the symptoms, such as exhaustion, are invisible and often not understood by others. Therefore, it can be hard to receive help and support from friends and loved ones.
To find out more about the emotional toll of PsA and what help looks like for you, we reached out to followers of our Facebook page. We asked community members to share: “What kind of support do you need today?”
Nearly 90 community members shared. Here is what was said.
Taking time for yourself
Several members of the community shared how important it is to take time for yourself. This can mean spending time alone, making time to do the things you most enjoy, or saying no to social events.
Psoriatic arthritis can often leave people exhausted in a way that takes some time to adjust to. In the long run, you will be less tired if you can take more time for rest and recharging.
“I do not do a good job of taking care of myself most days.”
“Understanding that I REALLY need some ‘me time’ for a couple of days before heading back to my remote job for a few weeks. I am not like the Energizer Bunny anymore!”
How important is self-care during a psoriatic arthritis flare?
Being spared judgment
Fatigue is something people cannot see, and thus do not always believe, for whatever reason. Several community members shared that they feel like they cannot always talk about their PsA since people often judge what they say.
Others shared that some people around them make it clear that they do not believe their PsA diagnosis and symptoms, which is hurtful.
“Sometimes the thing I need most is to not be judged. Yes, I have slept half the day away. The fatigue has caused me to be so exhausted that I just want to be left alone. Can I just have that without the looks and the under-your-breath comments?”
Do you feel judged when you cancel plans or need a rest day?
Being heard and understood
It is a challenge to live with a disease that can bring pain every day. One of the ways that we unload our pain is by talking about it with someone who understands or tries to understand the condition.
This kind of validation relieves stress. For those who do not have a friend or spouse they can vent to, it may help to open up to a support community, whether in person or online.
“Something or someone I can rely on to talk to.”
“Just someone who would listen and talk to me as I deal with this all alone.”
Have you found an online community that provides validation?
Having guidance to choose the right doctor or medicine
It can be very stressful to not know which doctor to choose or which medicine will work best for you. It can be especially hard when your doctor – who should be an advocate who gives support – causes you more stress.
Because your doctor is a big piece of the puzzle, it is worth taking the time to find one who listens and works with you to find a medicine that works for you.
“Just someone to say which medication will definitely work for me.”
“Meeting a rheumatologist for the first time tomorrow. Hoping for some answers.”
“Courage to tell my doctor my meds are not working. Been trying for months. She insists on me staying on them. I am afraid it may be time to find a new doctor. She does not listen to me.”
Does your relationship with your healthcare provider cause you stress?
Living with psoriatic arthritis has its challenges beyond pain, stiffness, and fatigue. It's not unusual to get frustrated by your symptoms and find it harder to do simple tasks. You may worry about the cost of your treatment or how it affects other people. And depending on where your skin plaques are, you might be embarrassed by your psoriasis.
Thank you to everyone who shared their experiences for this story. We are grateful to hear such a variety of viewpoints.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?