A letter to myself a year ago: Advice for the newly ill.
In October of 2021, I woke up with a fever and a small constellation of hives on my calf. Thinking I just had a cold and was reacting to the detergent at my mum’s house where I was staying I didn’t think much of it (except to rudely text my mum demanding she uses better detergent). But over the next month, the hives began to multiply, occupying every inch of my skin, marching on and on, fading and respawning, defeating every medicine the doctors gave me. I’d had chronic hives when I was twelve and it had been unpleasant but manageable with medication, this was different. Over the next three months, my health started to unravel. I started having daily fevers and rapidly losing weight, my joints and muscles began to ache, the rash that had begun as hives started to leave deep bruises, my fingers began to turn black in spots and the veins on my palms became at times a deep indigo. Waiting for a rheumatology appointment I was put on prednisone to manage my symptoms and eventually, a year later, methotrexate as well.
I was given a “best fit” diagnosis of still’s disease, with an autoimmune blood clotting disorder. The medication is working and now more than a year on from that first morning, I am feeling close to normal. But it is starting to sink in what I have lost this year, I think I survived this illness by pure denial. I feel I could have treated myself better, but instead, I raged against my body, a body that once again, like the times before, had decided to rebel against me. It didn’t want to submit itself to the gruelling work of my desires, it had opted out, opted us both out of the life I was trying to build. I want to apologise to that girl, the one who’s in so much pain, who’s convinced she’s once again making a big deal out of nothing, I want to tell her all the things I’ve learnt, some of them will make life easier, some just because they took so long to figure out and I wish someone I trusted had told me them earlier. So I’m writing to her, to the me that decided to finally take prednisone in December 2021, who realised when her fingers started to turn black that this was probably something more serious then she had thought, I’m writing that letter now, in case someone else needs to read it.
It’s nearly Christmas and you are not doing well. You took prednisone yesterday for the first time and you finally have some relief, but I know that for you that decision was crossing a line and you’ve realised this probably won’t be over soon. I’m not going to tell you everything will be all right, but I will tell you it does get better than this, here are some things I’ve learnt that will help you get through the next year:
1. I know you're covered in rashes and you’re exhausted, you’re in so much pain, but you need to see your friends and family, even if it’s just for half an hour, even if you're just lying on the sofa sleeping in the same room, it helps. The people who love you care, and there’s something about being around them, it won’t heal you but it will help you get through the rest of the week.
2. You’re on lots of medications with side effects of rage and paranoia, try to give other people the benefit of the doubt, remember you’re not seeing the full picture, it will make things easier I promise.
3. Call the hospital, call the GP, ask to be seen sooner, ask for more support, just because you can get through the day on prednisone it doesn’t mean everything’s fine now, there are medications that are infinitely less bad for you. Call the hospital now, set an alarm, call them every morning, you may be annoying but if you don’t raise your voice you won’t be seen quickly. You are sick, they’re not going to tell you you’re imagining it, you need to see a specialist, you have tiny blood clots throughout your body, it is serious, you are so lucky none of them has done significant damage.
4. You’re not going to cure yourself, putting all your energy into cures is stopping you from taking care of yourself - relax - find things that help manage your symptoms and are good for your mental health, gentle yoga, acupuncture, time with your friends and sisters, long baths. You need to accept that you are sick, it may not be forever, but denying it now is affecting your quality of life, it’s more important to take care of yourself than to try to cure yourself.
5. You’re going to put on some weight, you’re on steroids, it’s what happens, it isn’t the end of the world, when you are on less prednisone you’ll start to eat like yourself again, you are in pain, don’t feel bad about this as well. Buy some bigger clothes, it seems unimportant but it will genuinely make the day feel better if you aren’t always in leggings.
6. Just go out anyway, even if you are covered in bruises, even if your face is swollen, get out, see the world, you’ll feel better. Most people won’t notice what’s wrong. That’s not the same as not resting when you need to, it’s about not fearing the judgement of others, think about the people you see who have visible illnesses, it would break your heart to think of them staying inside because they were afraid of other people staring, give people the benefit of the doubt, and say f*** it to anyone who stares.
7. Stop googling your symptoms, you’re not going to find anything that helps you. Your disease isn’t something common, and you have lots of different stuff going on, you’re not going to find an answer, you’re just going to work yourself up.
8. Other people are also going through horrible experiences, they’re in pain, that doesn’t mean you owe them care, but your illness can eclipse what’s going on with everyone else, asks how they are doing, listen to what they say.
9. Be careful on social media, it feels like one half will try to convince you it’s your fault you are sick and haven't cured yourself yet, and the other will want you to make your illness your entire identity. This experience doesn’t define you and you will see it doesn’t bring happiness for the ones that choose to let it. Your illness is something that has happened to you, it is not the same as people who have lived their whole life with stigma and inequality. You are incredibly privileged you’ve just been dealt one bad hand.
10. One day you will feel like yourself again, you will run, you will go to yoga, you won’t constantly be in pain. You won’t be exhausted. You’ll have to make sacrifices to get there and to stay there, but you can have a mostly normal life, be grateful you get this, lots of people don’t.