The Label I Struggle With as Someone With Chronic Pain
Last Friday, I sobbed my way through a tribunal panel made up of a doctor and a judge. Going over everything that has happened to me since my back began to hurt seven years ago in front of strangers was excruciating, but it had the right result. The tribunal finally paid attention to what my doctors have been saying all along and ruled in favor of my appeal to receive Employment and Support Allowance, meaning I officially have reduced capacity for work thanks to chronic pain.
The money is far from huge, but it will make it easier for my family and I to stop dipping into our savings to keep going. This is a massive relief, as there is little left in the pot after my pain got bad enough to stop me working two years ago. I am still angry that the Department of Work and Pensions here in the U.K. assessed me so badly to begin with, and also treated me throughout like someone trying to pull a scam, rather than a responsible professional who happened to get ill. I am also pretty annoyed that it took 15 months with no money – which does not get repaid – until I got to see the tribunal panel. But reason has prevailed and I feel vindicated, even if the whole experience was so draining that I slept for most of 48 hours once we got home.
Now that I am getting back to normal, I am starting to think about where I am now in terms of my identity. My life is not solely defined by my pain. I am a wife and a mother, I help out at my daughter’s school when my back allows, I read, I see friends, and I have recently discovered a new interest in making jewelry. But I do not have a job in the traditional sense: my pain is too constant and too intense, I cannot sit or stand in one position for very long, and my flare-ups are too unpredictable to meet deadlines. Some days I cannot make it out of bed, I am constantly exhausted and my brain is often very foggy.
Before I was ill, “teacher” was the first word I used to describe myself for nearly 20 years, even when I was tutoring at home rather than in the classroom when my kids were babies. How do I define myself now? Do I just say when I meet new people that I don’t work? Do I say I’m disabled? I am somehow not quite comfortable with defining myself as disabled, and after a lot of thought, here are two main reasons I still hesitate to describe myself this way.
Firstly, a lot of people have disabilities that cause more physical limitations. I can still move independently, wash independently, drive my own car into town. I look “normal” from the outside. Like a lot of people, I was unaware of invisible disabilities until I actually had one, and to me the word “disabled” implied visible problems. I struggle with feeling that to describe myself as disabled would be an insult to those who need more help than I do.
Yet this isn’t necessarily logical. There is a great deal I cannot do, including travel for any significant distance and any prolonged physical activity. There are plenty of people in wheelchairs, or who are blind or deaf, who can do those things. I am in pain 24/7 and take a huge range of medication to try and manage this. I take a cushion and an ice pack everywhere. I cancel a lot of things. I feel my abilities are no longer within the “normal” range.
I think my second reason is the more significant, and it is that “disabled” sounds very permanent. My pain specialist has told me everything that can be done for my back has been done, although he was encouraging about the possibility of small improvements. I haven’t given up hope that I will get better, even if any recovery is slow and incomplete. As far as benefits go, I will need to reassessed by the authorities again within two years. But to say “I am disabled” firmly implies that my limitations are a part of who I am, rather than part of a period of poor health that will one day be over.
This is my real sticking point. I am aware that it is ableist to a degree: disabled people have a ton of abilities and thus identifying as disabled does not take away the things I can still do. But my chronic pain affects all areas of my life, and much as I may still find joy in many things, I can never make plans without considering it.
So: my name is Gabbie and I am disabled. I am grateful for what I can do, my abilities may yet improve, and my disabilities are not all I am. But yes, it’s a description I can no longer avoid.
Getty image by Victor Tongdee.