Do You Identify As Disabled?
Disability is defined as having a physical or mental impairment that has a ‘substantial’ and ‘long term’ negative effect on your ability to do ‘normal’ day to day activities – from the Equality Act 2010, so this covers the UK. The act also covers disabilities that are ‘fluctuating’, such as chronic fatigue and epilepsy, meaning that this covers pain like mine, which isn’t constant. Some days I can function just fine.
My condition is called Trigeminal Neuralgia and it causes substantial unbearable pain, which sometimes means it stops me from functioning on a daily basis and it’s long term and will last for the rest of my life. I’m sure a lot of people with TN identify as disabled. However, in the UK, neuralgia is a not automatically a recognised disability and you would have to prove yourself further than just your diagnosis to be able to claim disability benefits, for example.
I often feel that I have to justify my medical needs more than some other people, because mine isn’t recognised anywhere by anyone! I always find myself thinking that no one has even heard of it, unless they personally know someone with it.
I’ve taken anti-convulsant medication in the past to help control my nerve pain and I’ve had to pay for a prescription on the NHS, whereas people who take the same medication, but for seizures instead of pain, have collected the same prescription free of charge on the NHS next to me.
Sometimes, I need a seat on public transport, because of my pain or fatigue that comes with my condition, but I don’t want to take a seat at the front of the bus, because I’ll be judged. Sometimes I feel like it would be easier to say “I’m disabled” and have a label for what’s wrong with me that everyone would just understand, rather than having to say something strange like “my face hurts”..
I know I’m only looking at the term disability as a positive here and that’s because I’m already living with chronic pain.. But, me? I don’t identify as disabled, because I’m in a place in my life where I can function to a pretty normal level. I can work, I can pay my mortgage, I can look after my cats, I can wash and dress myself.. I feel like I’m doing okay at the moment. In fact, I get pretty defensive if anyone refers to me as disabled because I don’t personally identify this way at the moment, not because I think there’s anything wrong with identifying as disabled when you have the same illness as me. There are varying degrees of every illness and I support anyone identifying as disabled if that works for you.. I’m just not happy about the fight you’ll have to go through for it to be recognised for you.
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Very well said. I have been a nurse for 33 yrs now in the USA and have only met 1 other person with TN. That speaks volumes to rarity and loneliness it comes with. Even the nurses I work with don’t really know how hard days can be when there’s a particularly bad flare. But we all know how bad TN can get. And to those people suffering and unable to work due to pain or side effects from meds, we hope that your pain decreases.
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Thank you ❤