A chronic illness ramble

Being chronically ill is so hard. It feels like very few people around you actually recognise that you're even disabled. Worse yet? Your doctor is also likely to think youre a hypochondriac while you try to figure out what's going on. The underlying message a lot of spoonies recieve about our experiences and bodies is that: "Your experiences of your body cannot be trusted". The sad thing is? You probably spend the first few years of your chronic illness convinced that you're just being overly paranoid. There's nothing wrong with you! They're right, you're just overthinking it.

For the last 2 weeks, I've been experiencing POTS symptoms. My resting heart rate (HR) is 80 when sitting down, but when standing up, it shoots to about 110-125ish. It sustains this raise for 5 minutes, 10 minutes, whatever interval I record it for. But when I return to sitting? It goes back to normal. I can feel my body working hard at standing. It sucks. I want it diagnosed, but I know I've got a fight on my hands.

🧑‍⚕️ Medical ableism

I'm AuDHD. As any neurodivergent person will know well: our experiences with medical professionals is... Poor at best. We often get patronised by our care providers, ignored when serious symptoms occur and dismissed. This often means our threshold for getting medical attention becomes dangerously high, because we know we won't be believed unless its overwhelmingly obvious. The sad thing is? When we finally do reach our care providers in this state? We get told off for not coming in sooner. Its all so horribly ironic, because for the autistic among us, we have really good pattern recognition skills and can often spot things going wrong in the very early stages... Not that we're ever believed!

Whenever I get symptoms for a condition that is notoriously hard to get diagnose- my heart sinks: I know I'm going to go to my doctor for the 7th time this year. They're gonna think: "oh god, not her again". I'm gonna have yet another complaint that is actually linked to all the other complaints I've been going for (the gastrointestinal issues), that have also coincided with my POTS symptoms (appropriate because POTS causes gastrointestinal upset)... Only to be told that its just "anxiety", or to just... Ignore the issue.

I don't want to assume this will be my experience but, care providers make it difficult not to assume this is how I'll be treated!

"It's normal to feel poorly when you've been sick!" 🤡

2 years ago, I caught the flu. It was really bad, but I got over it in about a week and a half. After about 3 weeks though, I began noticing something: my hips felt... Stiff? Really stiff and kinda sore to move. They kept getting worse. One day, I was in town, and I physically could not walk back home. I had to get a taxi. Ordinarily I think nothing of walking 20k steps.

I booked a doctors appointment, and saw a doctor. He asked me what bought me in, and I described what was happening to me and how, I'd recovered from my flu, but this stiffness gets worse. Also that it happens whenever I've had colds recently too, for months after I get this inflammation. His response? "Well, whenever you get sick, its normal to feel poorly for a while after". He then suggested some deep heat and sent me on my way.

The mind boggles. 5, maybe 6 years of medical school. 2 years of foundation training, and at least 3 years of speciality training to become a GP to tell me to use Deep Heat. No scrutiny as to why I'm experiencing this. No acknowledgement that it is in fact, not normal, to be limping around from the pain and stiffness of your hips 3 months after a flu or cold infection. Like imagine? Imagine if for 3 months after being sick with a cold, most people just seized up for weeks on end!? The world would come to a fucking stand still!!!! I still don't know why that happens.

🧾 Keeping those damn receipts...

This is where I think its so damn important to monitor and record your symptoms. They can patronize you all they like, they can treat you like you have no agency or knowledge of your body, but they can't argue with cold hard data (well, they'll still try, but it'll certainly make it harder for them). It also has the added benefit of making sure that they don't get in your head. If you have this shit recorded, whenever you start feeling like you're "just overthinking it", you can look at that little document you have, and you'll have irrefutable proof of your experiences right in front of you.

Its depressing that we should have to do this. The whole point of the medical system is that the care providers in it are informed on the conditions they're trusted to spot and diagnose. But unfortunately, the burden often ends up on the chronically ill to spot and advocate for diagnosis long before our care providers do. Its a big responsibility and it takes up precious spoons we so scarcely have.

I think this also highlights the importance of being in community with other crips/spoonies. I don't think words can do justice to what a distressing experience all this external (and internal) denial is. It shakes your confidence, it makes you think you're just making things up. But I promise you're not. Being in community with others will help you see that, but will also help you chat with other people who have gone through the diagnosis process, who can help you figure out what to say to your care providers etc.

To the crips and spoonies reading this post, much love and solidarity to y'all. We have hard lives, and people dont give us credit for that very often. We KICK ASS! Love y'all <3

over and out xo