Sorry to all the disability advocates, this disabled girl is happy to accept your pity.

So, I’m disabled. Even in that picture over there where I look okay. Still very much in pain. Have been since I was 12 years old. Physically at least - I’ve also got ADHD and I could write you a whole separate post about the complexities of living with a neurodivergence but that’s not what this one is about.

I’ve always been aware of the disability influencer space, I’ve dipped my toe into it, I’ve watched people build huge communities, create platforms to inform others, and advocate and champion themselves. It’s a brilliant and beautiful thing. But there was one side of it I could never quite align with. It just simply didn’t feel true of my experience. The idea that disabled people weren’t there to inspire you, that we don’t need or want pity, that we are doing just fine thank you very much.

I always thought, good for you but truth be told I cannot relate. I am not going to stand here and pretend this is fine, that this hand I’ve been dealt is one I am happy with, one I would ever choose if given the chance to pick my own. I am not going to stand here and pretend I have made my peace with it, because that is not the truth.

Let me tell you about my disability journey. When I was around 12 I started getting tired all the time. It wasn’t just the tired you get at the end of a long day and you know you’re going to rest well. It was bone deep, right down at the pit of my soul. It felt like someone had filled my bones with concrete and dropped me in water and asked me to keep moving forward through it. I would fall asleep in the day, struggling to wake up long enough to get to school, struggling to focus when I did. It didn’t matter how much I slept I just could not shift the exhaustion. And I was in pain too, everywhere. It’s hard to explain to someone who hasn’t experienced it but I was in pain everywhere to the point I almost stopped noticing I was in pain. Because there was not one part of me that didn’t hurt, it became normal somehow. Normal to not feel normal. I had an exceptionally fast heart rate, and every time I’d go to stand up I’d have the room start spinning and my vision go black. Eventually, I was diagnosed with ME and POTS and referred to Great Ormond Street Hospital.

My pain kept getting worse in specific areas, whilst also staying determinedly present all over. I’d get intense migraines, my arms would ache like I’d gone 10 rounds in the ring, my upper shoulders felt like they were carrying the weight of the world. I’d lost what I loved too, I was active, I loved sports, and now movement felt like torture. Eventually after much testing to rule everything else out it was decided it wasn’t ME, but Fibromyalgia - because that’s the thing with these illnesses, there isn’t one test to confirm. You have to go through a whole load of uncomfortable elimination tests, and when Fibro is the only option left, that’s how they tell it’s that.

From 12-19 I struggled on, through school, through college. The thing with Fibro is, flare ups can be brought on by emotional and mental stress, a physical manifestation of what you are struggling with. So when I left school and had to start at a new college, with almost none of my classmates and friends from school, my pain began to worsen. I know I said I wasn’t going to talk about it in this one, but at this point the ADHD becomes relevant. So the thing with ADHD is, your brain doesn’t really make enough dopamine. It’s the chemical that motivates you. It’s how you have the drive to do things that are difficult or boring because the dopamine your brain generates acts as a reward for doing the thing. Our brains don’t do that. And that’s important because it explains a common thing that happens to girls that are late diagnosed. We go through school without having to try. It’s easy for us, most girls with ADHD are very intelligent and so the level that GCSEs are at, it’s not especially challenging. We don’t have to self motivate to be told we are doing well, and the doing well is what releases the dopamine for us. We are perfectionists who spend 16 years being taught we do the minimum and excel. Then we get to A-Levels and the level is made harder. Suddenly we are perfectionists who have been taught we should excel without trying and instead of excelling we are struggling. No dopamine. No reward. No chemical that motivates us to keep trying. And no one has ever taught us the skills we needed because we didn’t look like we needed to be taught them. We looked fine. So I went from a school where I knew everyone, had a solid support network, and was excelling academically, to a college where I was alone, had no support, and was failing and I didn’t know why. “I am doing exactly what I did before so why isn’t it working?” - I felt like a failure. And when you’ve already lost your access to physicality through pain, when your intellect is what you’ve always been praised for, to suddenly feel like you’ve not even got that? It’s very emotionally draining at 16/17. It’s hard at any age, but anyone who has been a teenager knows that big feelings feel HUGE. It meant that my pain just kept getting more intense, and the more intense it got the harder being a good student became and so the cycle continued.

Once I finished college I decided to take a gap year, figure out what I wanted to do. Medicine was out, so it was between trying out for Drama school, or studying Law. Either one would have brought me joy, I just didn’t know which I wanted the most. And then the car crash happened. A super cold January morning, the day we found out Alan Rickman died in fact. I was on my way to meet a friend when the car behind me, the brakes failed on an icy hill and straight into the back of me she went.

I’d had an accident not long after passing my test that had created a lot of pain in my upper right back, and the trauma of that rushed back. “Not more pain.” was my first thought, but I had no idea. Everything I had experienced up to that point would pale in comparison to what was to come. Initially I thought it was a kidney infection, my entire lower back in agony. I couldn’t walk, every time I ate I would throw up, I couldn’t lay on my back or left side without the pain causing vertigo, nausea, and eventually vomiting. Every time I needed to pee the pain in my back so intense it would cause my vision to black out. My clothes touching my back hurt, the temperature of the skin would be different to the rest of my body. Whenever I got my period the pain was so intense I couldn’t move from bed for nearly 10 days a month. On and on it went for months. I was living on ready salted hula hoops and digestive biscuits for around 5 months. Every test they ran came back normal. Nothing wrong with my kidneys. Nothing wrong with my bladder. Nothing wrong with my nervous system. Nothing wrong with my ovaries or womb. Nothing wrong, nothing wrong, nothing wrong. I hated going to the doctors, hated being looked at like I was lying, like I was imagining it, like I was wasting their time because there was nothing wrong.

Except there was. And it took over 3 years for it to be figured out. And not by a doctor, but my mother who had spent days upon days, months upon months, searching the internet trying to figure it out. Complex Regional Pain Syndrome. She took it to a doctor and “Oh yeah, that is what it is.” It’s usually seen in a limb, that’s why no one was picking up on it, it’s very rarely seen in the lower left side of your back. By this point I was 22. Most of the friends I grew up with had at this point moved away from home and already graduated university. I felt like I had been stuck in limbo, opening facebook and seeing everyone else making progress. But finally I had an answer, so what next?

Nothing. There’s no treatment for Complex Regional Pain Syndrome, no cure. What there is, is painkillers and pain management. Now here is the real kicker. Look up “CRPS McGill Pain Index” and see where it sits. This is one of the most painful medical conditions a human being can go through and me? I am intolerant of opioids. That’s right babey, those cards I was dealt? Multiple chronic pain disorders, one of the most painful conditions known to medicine, and opioid induced analgesia. Which basically means when I take a drug meant to lessen pain, the opposite happens and my pain is made worse. And then they send you to “pain management specialists” who are basically people who have absolutely 0 idea what it’s actually like to live with pain because they just read about it in a book, telling you to just breathe threw it, to find the good. It’s quite frankly unbearably condescending.

I had another diagnosis and less hope than ever before. Everything was agony. Sitting hurt, laying down hurt, walking hurt, driving hurt, getting the train hurt. All the things I loved and enjoyed were taken from me. I couldn’t do sports at all anymore, I couldn’t cook, I couldn’t stand for long enough to enjoy concerts anymore and concert seating on those hard plastic chairs didn’t make the experience any easier. I was put on an injection to stop my periods to try and make my life more manageable, but because I couldn’t move well it meant I put on weight. A lot of weight. I went from a size 8-10 to a size 22. If it was hard to be taken seriously by doctors as a mixed black woman with conditions they didn’t understand before? Ha.

When the pandemic began I was just approaching my 23rd birthday. And whilst I was concerned about getting covid and what it would do to my body that seemed only to work against me, I was happy. I loved lockdown. I was nearly 23 and stuck. I couldn’t go out and work, I couldn’t go out and socialise regularly, I couldn’t get out of the house whenever I wanted, I spent the majority of my time alone in the bedroom I’d been in as a teenager. It was beyond isolating and then suddenly the whole world had to live like I did. I was on a level playing field with everyone else for the first time in 11 years. I didn’t feel lonely or left behind, like life was happening around me whilst I stayed stuck, I didn’t feel like a failure or a burden or a waste of a life. I wasn’t stuck because no one else was going anywhere.

But life still happens, and time still moves. And one day you’re barely 23 and the next you’re 27. And everyone else was only paused in your reality and the play button on life set them free again. And now you’re 27 and you’ve never lived alone, never moved away from your home town, not been able to go to university, not been able to work, never been in a relationship because where do you meet someone when you’ve been locked in by pain since you were 12 years old? And every time you open facebook your friends have moved further way. Like literally, they don’t live here anymore. But also figuratively the distance between you keeps growing. They’re falling in love, they’re married, they’re travelling the world, they’re having babies and starting families and they just bought their first home and oh they got a dog and did you hear about the big promotion they got in their big fancy corporate job?

They are living. They are creating the life they dreamed of. And you are 27 but still 19. And you are 19 but still 12. And the life you planned for yourself will never be yours. And you are in pain. In every way a person can hurt, you hurt.

You can’t do things for yourself, you are 27 and your independence is dependent on someone else, so not really independent at all. I don’t have any control, I can’t control the amount of noise within my home because it is not my home. I can’t control what I eat and when because the food is not just for me, and even if it was I cannot do the cooking without risking severe injury - I’ve lost track of the amount of times burning water has scalded my skin as I try something as simple as draining pasta water. I can’t go where I want and when because I am dependent on someone else to take me there and pick me up. There’s times where I cannot shower myself, cannot wash and comb my own hair, cannot do something as everyday as shaving my own legs. I am 27 but I am no more independent than a child.

And when the person that you depend on is your mother? When she cannot so much as take a day to herself because she needs to be accessible to me whenever I may need her because I am in pain always, and a flare is not something that can be predicted? When I sit and see how much of her life has been sacrificed to care for a child that should be living her own life now? When I sit and think about 12 year old her and what she thought her life would be, and what it actually is, and I know that the reason it isn’t what she would have wanted is because of me? How both of us lost the lives we wanted, the lives we planned, because of this illness? It’s hard to feel anything but a burden, to feel guilty and angry.

And that’s without even diving into the way society treats you when you can’t work and don’t have kids or a partner, as though that is the only thing that gives you value as a woman. Without diving into the way society treats disability as if only those in a wheelchair are actually disabled and the rest of us are just lazy layabout scroungers. Without getting into the government gaslighting, the dehumanising DWP assessments, the way you are treated like a criminal for needing care. Without diving into the loss of identity when the future you planned is taken from you and there’s not a damn thing you can do about it. Without diving into the complexities that come with being the eldest grandchild and the one furthest behind.

And yet I still have to get up. I still built this platform, I still fight every single day to make something of my life even if I have to make the bricks myself because this world is not built for someone like me to succeed, it is not interested in making concessions and adaptations. Can’t work in office at least 3 days a week? Sorry, we don’t want you. Can’t commit to set hours? Sorry, we don’t want you. So I built my own door and I opened it myself, and it doesn’t pay me a god damn penny but I get up and I do something that hopefully educates, entertains, and inspires.

So I’m sorry to all those disability advocates. Because I will happily take your pity. You and I both know this isn’t an existence anyone would choose, let us all be completely and totally for real - it’s shit. I would pity someone who had to live with what I do. Lord knows a bit of pity is the least I deserve for getting up and trying every day when every single day is agony. And dammit I am here to inspire you. It is pretty inspirational that I haven’t just given up on life. That with no idea what my future is going to look like, little hope of ever having real independence, no real hope of finding love and settling down, and financial stability being a fever dream, I still try. Coming up against mountain ranges worth of hardship and still trying is inspirational and it’s not condescending of you to think so. Because I think so.