Chronic Fatigue Syndrome (CFS) is an invisible disability characterised by severe/debilitating fatigue. The causes can be from anything including autism/PDA, a viral infection, an operation, an accident, problems with the immune system or stress/trauma.
The effect of CFS is different for every person and can range from severe to mild, for some it clears up after a while and for others it lasts a lifetime.
For PDAers, having CFS as well can make life harder than usual. Having to battle anxiety, demand avoidance and fatigue can leave a person exhausted and de-spirited. I myself find that I ether don’t have the energy to fight against the need to not do something important or when I have finally been able to meet a demand I just don’t have the energy to finish the task. It can leave me thinking what’s the point of even trying.
“I think my CFS and demand avoidance feed each other: if I am weak through CFS, I am less able to overcome demand avoidance (plus chores and other demands require energy I just don’t have). This increased demand avoidance is draining and feeds my CFS” Says Susan, an adult PDAer.
When it takes all your energy just to accomplish one task, but that task takes lots of mental energy just to get started, you quickly become exhausted. Some days just taking a shower is a milestone for me.
“PDA and CFS are both high-impacting, but invisible conditions. I also have a diagnosed, hardwired sleep disorder, DSPD, which means I can’t do mornings. To other people, I know I seem lazy and ill-disciplined. This bothers me a lot. Social anxiety and wanting to come across well to people is part of PDA.” Susan explains.
It’s hard enough knowing we can’t manage the same amount of tasks and social events as people without chronic conditions, but having people tell us we are lazy or unmotivated and berating us for not doing as much as they do makes it so much harder to cope. It impacts our mood and makes us feel worse about our situations, a situation we have little to no control over.
“My self-esteem is not huge. How can I tell how many of my difficulties stem from laziness? Should I try harder? Should I push myself more? How can I feel good about myself when I do so little compared to others?” Susan adds.
When we do try to push through our difficulties it can make us feel even worse. I know myself that I have to manage everyday to ensure I don’t do too much. Then I end up thinking I’m just being lazy and not trying. But when I do try to do more I end up so exhausted it sets me back for days.
“It is like a small vampire of emotion sucking away every tiny little bit of ability I have to function” another PDAer explains.
“Having PDA also means I need a lot of downtime because I get overloaded. How to tell what is PDA overload and what is CFS?” explains Susan.
Many Autistics and PDAers experience tiredness and fatigue after holding in all their Ausomeness; their autistic quirks and differences, for a long period of time. Masking in order to fit in socially is both mentally and physically tiring, many find they need time alone afterwards to de-stress and regain their energy. When you also have CFS that exhaustion can last for days.
Susan says “I think my CFS is made even more invisible because of my PDA autistic hyper-focus. I have always loved cooking, for example. When our daughter was a toddler and my CFSwas very bad, I had energy to stand and cook, but not to do anything else; I had to lie on the sofa immobile. In applying for disability benefits, a large chunk of points are awarded for difficulties preparing food. As usual, I don’t fit the one-size-fits-all system.”
For us, even the things we love have to take a back seat in order to function daily, they have to make sacrifices just to manage the basics. Some choose to miss out on important things to do the things they love because they don’t have the energy to do both. I’ve gone without meals because I choose to participate in a group activity instead. Uni was the worst, by the time I got home I literally had no energy left, it was all I could do just to put the TV on so I had something to distract me while I recovered on the sofa, stuck at whatever channel I’d put on as I hadn’t the energy to pick the remote up. Some people don’t even manage to do that.
CFS should never be underestimated. It’s like having run a marathon every day and still be expected to meet the usual everyday demands of living. Combine that with the demand avoidance of PDA and it’s not surprising we struggle. It would help if others were more aware of just how debilitating CFS can be.