Why I don’t want to be admitted to the hospital

I don’t know about you and your experiences with healthcare, but my experience has mainly been negative. I don’t want to go into all of the details here, but I have written about some of the failings I’ve experienced in a blog called HealthCAREanxiety, previously. Because of my experiences, I have a lot of mistrust when it comes to the healthcare system.

This mistrust has been further solidified by other people’s experiences. I run the IBDSuperHeroesFacebook group and am active in the online IBD and ostomy community on other platforms too. I realise that social media often presents the more negative side of healthcare and illness. I realise that there are many people who have not had to go through traumatising experiences, but that doesn’t reduce the number that has.

I often see people going to the hospital with things like flares or intestinal blockages, and they’re just sent home again. They retreat, feeling unheard, scared, miserable, and unwell! Or they’re admitted and ignored. No one seems to know what to do with them. They don’t receive the right diagnostics or treatment, and they’re often left in pain.

A culmination of all of these things has resulted in my point-blank refusal to be admitted to the hospital. Even I think that’s ridiculous, especially considering my role as an advocate, telling people to fight for the care they deserve. On multiple occasions, I have stayed home with a bowel obstruction, when I know I should have gone to the hospital. I know I would have demanded someone else go in the same situation. I know that it’s dangerous and that there’s a high risk of bowel rupture and severe dehydration due to my previous surgeries. I’m usually such a rational person, but all rationality goes out of the window. Why can’t I make myself go?!

My conclusion is fear. Panic maybe. And that massive issue of mistrust. I stay home thinking, when I get there, they will just send me home anyway because they don’t understand the complexities of previous surgeries and bowel obstruction. If they don’t send me home, I’ll be admitted and suffer mistreatment. I’ll be ignored. I’ll end up being given less pain relief than I’d have on a normal day at home (because that’s been MY experience). They won’t care for me.

I know the driving factor of those thoughts is fear, but the fear is only present because history has taught me that’s what happens. It’s a cycle that the rational and logical part of me knows I need to break free from. However, the stubborn side of me (which is definitely the dominant side in this scenario) still wants to dig its heels in.

How can I make presenting at A&E easier in the future?

Anyone who knows me knows I have a, probably unhealthy, obsession with planning, lists, structure, and organisation (control issues). I suspect this stems from feeling like I’ve had no control over my health for many years, but that’s a story for another time…

Being prepared makes me feel much calmer, so planning and lists actually tend to reduce my stress levels. With the help of a health psychologist, I started thinking about what I could control within the above barriers. The thoughts that stop me from going to the hospital.

Chances are, I’m still going to sit it out at home for as long as possible, but maybe that won’t be AS long if I remove some of those anxieties about when I arrive.

It’s highly likely that when I arrive, my pain levels are going to be high and I’m going to struggle to communicate anyway. My partner will probably be the one that goes to the reception. So, I’ve created a document which he can simply hand over, in the hope that this will in no uncertain terms tell the receptionist, and the doctor I see after that, that I need to be there. I have stapled a copy of my current medications to the document. I’ve even gone as far as to prep a list of tick boxes for symptoms and the generic solutions I’ve tried at home. If you think something like this might be useful for you, I’ve prepared an A&E presentation template you can download and edit.

I’m also in the process of packing an overnight bag with underwear, PJs, stoma supplies, toiletries etc. This should lessen the stress of preparing to head out the door.

Even I am interested to see what happens when I next have a blockage. Will it really help? Have I managed to ease some of the anxiety?

One thing’s for certain, I’ll not be rushing into a blockage to find out!