Those of us who battle daily with psoriatic arthritis (and other auto-immune diseases) know one particular enemy by name – fatigue, chronic, overwhelming fatigue. Those without this life-altering condition, hear it called by other names – laziness, loafing, not trying hard enough, giving up, giving in, and slacking off. These are all judgmental words that show how little others understand autoimmune diseases and the effect they have on a person’s body and reasoning abilities.
The constant inflammation caused by psoriatic arthritis, the continuous battle as our own immune system attacks our cells, tissues, joints, and organs, exhausts our bodies in strange and indescribable ways. People who don’t have PsA can’t possibly understand how you can wake up after 8 hours sleep and still feel exhausted; how you can feel fine one moment, and unable to so much as lift your arms the next, or why each afternoon is met with an overwhelming fatigue you just can’t satiate.
In addition to this overwhelming, harrowing exhaustion comes another condition with an innocent-enough name, “brain fog.” Living with chronic pain overstimulates your system to the point were it affects your mental clarity, your ability to focus, to deal with stress, to respond to changes, to process information, and to accomplish the most basic problem-solving functions.
I spent my career as a teacher being able to multitask, problem-solve, change gears quickly, observe and monitor a dozen things at once, and respond without a moment’s hesitation to the changing needs and situations in my classroom. But now, a simple, seemingly inconsequential change stymies my ability to “change gears,” adapt, be flexible, or reason through even the most minimal of complications in plans. It is almost inconceivable how someone who once thrived on flexibility and adaptability can now stare hopelessly at a calendar, unable to figure out how to reschedule an appointment or remember what the name of that white powder that looks like salt, but makes things sweet, is called. Nothing in my mental intellect has changed, but my ability to deal with complications or express myself with clarity has been forever altered.
The worst part is the intermittent nature of this ineptness. Sometimes, I’m as sharp as ever, and other times, I struggle to find words that have been a part of my vocabulary since childhood. I never know, from one moment to the next, which person will be standing here – the competent problem-solver, or the confused, disorganized laggard.
The way the rest of the world reacts to our sudden, intermittent lack of clarity or adaptability is the most challenging part of this disease. People who have spent their entire lives being competent and efficient are now reduced to blithering, confused, overwhelmed individuals, and yes, it hits our self-esteem and self-worth more than anyone can imagine.
So when you hear someone with psoriatic arthritis talk about fatigue or brain fog, please know that the struggle is real. The exhaustion and muddled feeling is not a sign of laziness or inattentiveness – we are not slacking or apathetic. It is, quite simply, our body’s way of dealing with the near-constant attack by our over-active immune system.
Wow
So accurate. At times i thought i was going mad with how i was feeling. The fatigue and brain fog. Trying to speak words that i can see in my head how they are spelt but not being able to say them because my head wont let me pronounce them. Thankyou for your insight. We are not slone. Just wish people would or could understand.
It can be so frustrating at times, to go through this and realize that nobody else understands. If you’ve never experienced this first hand, you would be hard-pressed to believe it is real, but it is so very real to those of us with autoimmune diseases. Knowing that we are not alone in our struggle makes it so much easier to bear. Thanks so much for sharing.
Thank you for this article. I get frustrated that others don’t understand but the truth is I don’t understand it a lot of the time. When I am sitting at my desk trying to do a task that I do frequently and can’t remember how to get to what I need. When I am called into a meeting to discuss policy or program planning and I can’t grasp all of the information I know is there somewhere. Yet, the frustration with others close to me not understanding continues.
I’m glad you found something of value in my article. That makes it worthwhile to me. I think the hardest part is how completely functional we are sometimes, and how, just a few minutes later, we can’t grasp something we’ve done successfully all of our lives. I get so frustrated by that. Sometimes, I just repeat over and over “I am not incompetent, I’m ill.”
Thanks for sharing part of your journey!
Have you found anything at all to help
With the brain fog?? Just curious . I have a family member going through this exact scenario now.
Hi Tina. Unfortunately, as long as our immune system is attacking our body, brain fog is the result. The more active my PsA is, the more intense my brain fog. When it is better controlled, the brain fog fades a bit. I’m hoping, when we finally find the right biologic for me, that my brain fog will be a thing of the past. Best wishes.
I am not incompetent, I’m ill. I am not incompetent, I’m ill. I am not incompetent, I’m ill. Thank you. I’m going to keep repeating that. I’m going to say that to myself in front of a mirror every day to remind myself. Thank you so much Jan Mariet. This is a rough road to travel.
That’s why we have to be there for each other. Who else, but someone going through it, would understand? Best wishes!
Very accurate people just don’t understand it not just the pain from inflammation the stress rise in anxiety as you can no long do the things you used to do brain fog is so real and accompanied by fatigue is a battle itself
I agree, Keron, people just don’t understand. Hopefully, we can educate some people. Thanks for sharing!
I read this and cried, just knowing someone else felt the same and I wasn’t going mad was a relief, this disease also took away a career i loved too, im still struggling to come to terms with it and when I have a few goods days, I think to myself I’m improving and get excited by the prospect of returning to normality but then “wham bam” it returns full force to hit me back down again.
Looking forward to following your blog.