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Healthcare Anxiety With UC

Health anxiety is a thing. Health anxiety is when someone spends so much time worrying about their health – that they are ill, or about getting ill, that it negatively impacts their quality of life.

I have healthCARE anxiety, but it doesn’t seem to be a thing? Some people with health anxiety avoid seeing a GP because they’re scared of what they might find out. That’s not me.

What is healthcare anxiety?

Whitecoat syndrome is the closest thing I can think of. Whitecoat syndrome is when there’s a change in a person’s blood pressure due to the healthcare setting and/or presence of a healthcare professional. Still, that’s not me. That’s not what MY anxiety is called?! Yet it’s actual, life-altering, anxiety.

I don’t reach out to doctors because I don’t trust them. I’ve experienced so many failures from primary care doctors, as well as being failed whilst receiving treatment in the hospital. I’ll give some examples, but know that there are many more!

My inpatient experiences with ulcerative colitis

Hospital admission 1

I was simply not cared for properly. Basically ignored. Maybe because I was 19. Did I look young and able? But even after surgery to remove my colon, my mum had to come and help me do things like baby wipe my whole body and dry shampoo/brush my hair.

I got sepsis because the surgeon hadn’t put a drain in, which is standard procedure after removing a colon! I was ignored when I complained about the pain. I couldn’t even take in a full breath. It wasn’t until the nurse changeover that someone actually listened. That one nurse saved my life.

I needed a second surgery to clean me out, immediately. My mum had to come and sign the consent because I was too out of it. It was a very long and traumatic experience. They even lost my colon down the drain! That pretty much sums up the state of my care during that stay!

J-pouch connection surgery

The day after my surgery, I was discharged because I’d been to the toilet. I ended up having to go back in because I was in agony, vomiting, and had a distended abdomen. I was told that scans showed that my bowel had fallen asleep, and no one knew when it would wake up. No one communicated with me further than that or explained what post-op ileus was.

It was 2009. I knew nothing about IBD or ulcerative colitis still. I didn’t have the internet in my pocket, or even at home. I thought I was going to die. So did my mum. I was petrified. A few days later, someone came back and said they’d reviewed the scans again, and actually, there was post-surgery swelling stopping anything going through. So, someone can’t even interpret scan results properly?! So what’s the point in having them?!

Resection and j-pouch revision

The epidural numbed my legs, not my abdomen. No one would listen. No one would give me pain relief. By the time they did, I’d sat there for 12 hours, feeling all of the pain of my abdomen being sliced open. They took out the epidural and gave me a morphine PCA. Some line wasn’t changed or it hadn’t been set up properly or something, so I was continually administered morphine.

Some period of time later, I was throwing up, and in and out of consciousness. I actually nearly died from a morphine overdose, because someone f***ed up! Naloxone saved my life. Even standard care lacks so much; waiting far too long for pain relief, not taking into account what pain relief I was taking prior, and massively underdosing me, making it pointless anyway. Being given food I can’t eat and ignoring the buzzer resulting in me being covered in my own s**. It’s been an every time occurrence. They aren’t busy with other patients, they’re chatting at the nurse's station!

I get so much anxiety at the hospital

When I go into the hospital, my brain turns off. I barely register anything. All I think about is the steps I need to take to get home again. I have to buy new and different toiletries, because ANY smell associated with the hospital when I am outside of it, throws me back in, and I can’t cope. I bought a new lip Vaseline once, having forgotten I’d used it in hospital. As soon as I opened the tin I smelled hospital. I closed the lid and gave it to my mum.

Healthcare outside of the hospital

It’s been a constant battle to be listened to. I’ve been let down and felt ignored so many times. With my IBD, I was instantly diagnosed with IBS, without as much as an examination.

I had Rosacea on my face, which I ended up diagnosing MYSELF. Every time I saw a GP, they said if the next cream didn’t work, they’d refer me to Dermatology. It went on for months. It took YEARS to see a rheumatologist because GPs weren’t taking my pain seriously, or they were concluding I was depressed. I walked around with an abscess and twisted intestine for 18 months because no one would listen. No scans were done. By the time they were, I had to be admitted for emergency surgery.

I’ve had to be my own admin assistant for my health for so long. No one seems to be able to do their job properly. Sometimes, it’s simply chasing test results, or making sure things get where they need to go. Recently, I was watching the online system because I was waiting for a referral to be sent. It went 6 weeks later... after I reminded them!

I don't trust the healthcare system

I don’t trust my healthcare system to fix me or to solve anything. I don’t make appointments when I should: when something’s wrong. I leave it, constantly telling myself I’ll call tomorrow. I make excuses for why I haven’t. The fear of having to argue to be heard is real. My anxiety is through the roof before I even force myself to book an appointment. It takes so much out of me, that it leaves me mentally exhausted.

I have no problem going to the hospital for routine appointments or diagnostics. I’m in and out as fast as possible. I didn’t have a problem going for infliximab (Remicade) infusions. I knew I wasn’t staying. But every part of my soul wants to avoid admission. When people say, "You’re in the best place for you," I scoff!

I will stay home with a blockage when I shouldn’t. Again, fear that some jobsworth in A&E who has no knowledge of IBD or ostomy surgery, is just going to send me home again. And fear that if they don’t send me home, I’m in. I’m in the hospital, which is the last place I ever want to be!

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