What Being Disabled Means To Me

I’ve been going back and forward with myself all month about whether or not to post something for Disability Pride Month. You see, disabled is a label that I have a complex relationship with.

I was diagnosed with Fibromyalgia in 2019, after first noticing symptoms in early 2018, although they had probably been about for longer than that, but masked by having a newborn in the house. Fibromyalgia is a very little-understood condition which causes widespread pain and fatigue (along with a whole host of other symptoms) and has no known cure. Treatment is a bit of a gamble, trying various different combinations of medications and lifestyle changes until you find something that helps. Some treatments help for a while but become less effective over time. I tried a few different combinations of drugs, until eventually I decided that nothing I had tried helped enough to balance out the side-effects of using them, and now I largely manage my condition on my own.

For the longest time I refused to think of myself as disabled, because that word implied a finality that I wasn’t ready to accept. I thought of myself only as ‘sick’. If I was sick, then I could get better, right? It has been seven years now since I got sick, and while my illness ebbs and flows, I have never gotten better. I haven’t found a miracle cure, haven’t figured out how to heal myself. In some ways, accepting that the term disabled applies to me feels like defeat. Like giving in to this thing that took over my body without warning and changed my life in ways I would never have agreed to.

Before I got sick, I was really into nutrition and fitness, and in a lot of ways, that has probably helped me a lot. I was strong and reasonably fit. I ate a largely healthy diet, and still do most of the time. I am not able to be anywhere near as active as I used to be, but I still manage a surprising amount, given the constant pain and fatigue that I have to overcome to do anything.

Since catching Covid in 2021, my baseline pain worsened and it has taken years to get back to something resembling the level of ability I had before then. I also seem to have developed a new condition, which is still under investigation but looks likely to be POTS. This is a disorder of the autonomic nervous system and causes problems with various parts of the body, but especially the heart. For me, what it means is that on a bad day, if I stand for too long, my heart rate climbs to the point that my fitbit thinks I’m exercising, even when I’m doing something stationary, like standing at the school gates waiting for my kids to come out, or standing in the kitchen chopping vegetable for dinner. The effect of the increased heart rate is that I feel like I’m about to faint. My vision tunnels, I feel waves of cold prickles running over my body, I feel lightheaded and nauseated. I start to shake and if I keep standing at that point, my vision fades out completely. I’ve only actually lost consciousness a couple of times, but the symptoms as they stand are debilitating. While in the edge of unconsciousness, I am not in any way able to take care of my children and I live in constant fear of passing out when I’m alone with them.

So, in recent times, on a day-to-day basis, I’m dealing with constant muscle and joint pain, brain fog, deep, crushing fatigue, memory problems, digestive issues, random itchiness and skin irritations, joints that won’t stay where they’re supposed to be, problems with regulating my temperature, and coming close to collapse at random moments, with nothing I can really do to control it, except lie flat on my back when symptoms start until my heart rate comes down again.

This is not the picture of a healthy person.

I am disabled. I have to plan out my week to spread out physically demanding tasks - things like cleaning the bathroom or sweeping and mopping the floors - because if I try to do them all in one day, it’ll spike my pain so much that I’ll be out of action for two or three days afterwards. I have to plan my days so that I can rest after walking the kids to or from school. I have to sit down and rest after a shower, because it makes me feel faint. I have to consider, if I take the kids to the park after school, will I be able to stand and cook dinner when we get back.

When it comes to my work, I have to plan for pain to slow me down. I have to assume that there will be days lost, when my hands are too stiff and sore to type, or when the pain suffuses my body and my mind, lying over me like a cloak that separates me from the rest of the world. Those days, I am capable of nothing but enduring, until the tide ebbs again and I can come back to myself. When planning things like events to promote a new book, I have to consider how spread out the events are, so that I can rest in between. I have to think about whether my body will let me drive there, do the event, and drive home, or if I’ll have to stay overnight somewhere so that I can spread out the travel. I have worked myself into health flares more than once in the last few years, because I chafe at the limitations my health puts on me and sometimes I ignore them, until my body just stops, and I can’t get up.

Being disabled, for me, means that my body will not allow me to do all of the things I want to do. I can (and do) use various techniques to manage my symptoms, and work around them, but I will never be symptom-free. I will never not have to think about it. I will most likely spend the rest of my life in the search for the precarious balance of health that lets me do as much as possible without bringing on a flare. And no matter how much I manage to do, it will never feel like enough.