Making the invisible visible

I use a cane to walk. My cane is blue and printed with bees and daisies. If I have to use a cane, then I’d rather have something pretty. I also wear silver splints on my wrists and hands. The splint on my right hand stabilises my thumb and wrist, and I also wear one that goes over my knuckles. I wear an orthosis on my left side that starts on my hand and ends halfway up my forearm. I regularly receive compliments about ‘jewellery’, but I tend not to tell people that my ‘jewellery’ actually keeps my joints from dislocating.

Even though I also use my cane for balance, the main reason for me using these aids is because I have Ehlers-Danlos Syndrome (I have the hEDS type), a connective tissue disorder. hEDS is the reason why I have POTS. My mobility aids make my previously invisible disabilities visible. For example, people are able to see that my cane means that I may need a seat.

My symptoms worsen the longer I stand. When I say that I need to sit down, I usually need to sit down immediately, otherwise I will faint or feel too ill. The downside of this is that I frequently need to sit on surfaces that are not very clean, such as the ground at the bus stop or on a shop floor. POTS really is a disability, and it becomes visible when I am forced to give into it by sitting on a floor.

Certain circumstances make my POTS worse. Large meals or lying down for a long period of time can make it worse, but I particularly notice an increase in my symptoms during hot weather or when I’m on my period. Despite POTS not being a mental illness, as many doctors often incorrectly believe, anxiety and other emotions can also worsen it. This is precisely what I experience when waiting in the hallway…