Image of distressed woman in bed with a flame behind her.

Fearing a PsA Flare

It didn’t take long for psoriatic arthritis, psoriasis, and fibromyalgia to alter my life. In addition to having to change how I did things, how often I did them, and accept things I could no longer do, I began to experience emotional responses that were not normal for me. Once an adventurous person, my chronic illnesses soon turned me into someone who lived in fear.

Entering uncharted territory

From the time I was diagnosed until a few years ago when I was finally able to find a pain management plan that worked, I developed many unhealthy fears. I feared leaving the house, eating, talking with people, taking a shower, getting out of bed, traveling, making plans, and changes in the weather to name a few. You name it, I feared it. The reason I feared all of these things is that each and every one of them increased my already unbearable pain level. I often needed to spend the rest of my day in bed after taking a shower. Anything requiring me to leave the house resulted in days and sometimes weeks spent in bed. High pain levels messed with my cognitive functions which made it difficult to converse with others. The hardest part of living with chronic pain has been its unpredictability. It would have been a lot easier if my diseases had rules to follow like; two days down for going grocery shopping or one day down for taking a shower. Never knowing when or how severe I would experience brain fog complicated things even further. It was like I was walking around a minefield without a map.

The cost of fear

While my fears were justified, they weren’t healthy. Fearing the very things that I either used to love doing or never had to think about took a toll on my mental health. Fear of not knowing if I would have to cancel at the last minute would produce anxiety attacks. Having to cancel would deepen my depression. I felt guilty for having to have my family take over all of my household chores. It broke my heart to miss out on going to church or the movies with them. Meeting new people terrified me. What if they wanted to get to know me better or become my friend? I didn’t have the time or energy to put into a new friendship let alone be a good friend to my existing ones. Fearing all of these things caused me to withdraw from friends, family, and my own life. I became a prisoner of my chronic illnesses and rarely left my bed.

Moving on

I lived like this for 12 LONG years. Knowing that this wasn’t living, I began making changes. I started by trying new ways to reduce my chronic pain. Even though the first decrease was tiny compared to the relief I am experiencing today, it felt like an enormous drop in pain at that time. That smidgen of relief made it possible for me to better assess my pain and what was producing it. It made it possible for me to figure out what actions increased or decreased my pain. I had to accept use of mobility aids, help from others, and that I had to do things differently than before I became chronically ill. While I still couldn’t predict a major flare, I was able to start leaving the house more as long as I planned to rest beforehand and scheduled days to recover afterwards. During that first year I could only handle one or two outings a month in addition to grocery shopping, but that was better than what I had done in the years prior. This boosted my spirits and encouraged me to keep finding ways to improve my chronic life.

Are you living in fear of a flare? My advice to you is to NOT give up! Just because there isn’t a cure for psoriatic arthritis, it doesn’t mean that it can’t be managed. Keep searching for ways to reduce your pain and in the meantime, do whatever it takes to make your life easier.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • imschmarte
    9 months ago

    Hi Cynthia! So glad you have learned to manage your pain and how to do more in your life. I too have a very hard time going out to do anything. Everything you do has a consequence, and it usually includes pain, and lots of it. I do get out, but like you, have to plan it, and know that I will have to stay in for the next few days to recoup. Good luck to you!! Never give up fighting!!

  • Mr Benn
    9 months ago

    This tells only half the story for me. Moving on from this I have also developed 99.9% food intolerance. I’m now in a really unsafe state. Staying “normal” is very hard. I’m insure what normal is anymore, with constant feelings of losing my mind. I have only 1 persons support and if that was to disappear then life would be futile. Life ain’t the same after being so ill and nobody cares especially doctors, psychiatrists and NHS and also the British Government for making it so difficult to get help!

  • MinuteMade
    10 months ago

    I’ve been thinking I’m alone in these feelings. I’m grateful there are others who understand these feelings of helplessness… hope we can help each other.

  • Beccajane
    10 months ago

    This could have been written by me. Thank you for putting it into words for me.

  • MinuteMade
    10 months ago

    Hi Beccajane, I thought the very same as you. We’re not alone in this.

  • AnneMarie
    10 months ago

    Have you found your Fibro and/or PsA to ever bother your stomach?

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