*Please note that this article is not meant to offend anyone, this is one person’s experience of living with severe health anxiety*
On the third anniversary of a life-saving surgery, I convinced myself I was going to have my legs amputated. I was healthy and well, and it didn’t make sense. But at the time, nothing made sense.
In January 2015, I had the entirety of my large intestine removed in an emergency surgery, when I was just 20 minutes away from death.
I had been unknowingly living with ulcerative colitis, a form of inflammatory bowel disease, and my colon was so severely diseased that it almost perforated.
It was an incredibly traumatic time. I had been in hospital for a week severely ill, on maximum painkillers, in excruciating pain, having acidic, watery diarrhea 40 times a day. I had fallen incredibly sick two weeks prior and had spent every day in and out of consciousness. And then suddenly, laying in my hospital bed, everything came to a halt, and I started to hear a popping from my stomach. I had literally heard my bowel start to burst.
After a three-hour, major surgery to remove the diseased bowel, I awoke with a stoma bag. I was upset and confused. I was traumatised. I was 19 and I had no idea what a stoma bag even was, and I felt like my world had shattered around me. Over the space of ten months before having the stoma bag removed and having a reversal where my small bowel was stitched to my rectum to allow me to go to the toilet in the ‘usual way’ once again, I came to terms with the stoma bag. But I didn’t come to terms with the trauma – though it took me three years to find that out.
It wasn’t just the surgery that had traumatised me, it was everything that led up to it which has now had a lasting effect on me.
Two years prior to the operation, I was experiencing symptoms related to IBD, but my fears were ignored.
I was suffering with chronic constipation to which I was relying heavily on laxatives. I had lost so much weight that I looked anorexic. I was experiencing excruciating abdominal pain and I also had dark red rectal bleeding that was so heavy it trickled all the way down my legs and onto the floor.
I went to the doctor several times, and was ignored each time. My constipation was probably just piles. I was so skinny because I had an eating disorder. My abdominal pain was just period pain. My rectal bleeding was actually coming from my vagina. It didn’t matter how many times I went back with fears over my symptoms, doctors refused to listen because I was just a hormonal young woman in their eyes. And then, as you now know, I nearly died.
When I eventually fell ill to the point I was either passed out in bed or on the toilet, I called the doctors, who simply prescribed me Buscopan for my bowel movements. I went to A&E three times and was sent home every single time, being told it was just a stomach bug and even to ‘eat more bananas’. It took going to my mum’s doctor to finally send me in, with suspected appendicitis. I had my appendix removed, to find out that wasn’t the cause, and a week later… bang.
But this wasn’t the first time something like this had happened.
Three years prior to this, I was admitted to hospital with pneumonia. And, somehow, whilst in the care of the hospital, my lung managed to collapse and I was rushed to ICU and had a chest drain inserted into my lung for three days. Again, I nearly died.
After both operations, I thought I was doing fine, but three years after the stoma bag operation something snapped, and I started experiencing debilitating health anxiety. It made sense. It had taken three years from the pneumonia to the ulcerative colitis, and I was filled with panic that every three years, something more serious would happen. And then I convinced myself that I was going to have my legs amputated.
I feel bad telling this story because I do have my legs, and I don’t want anybody to think I’m being insensitive or silly. But it’s also important to show just how severe health anxiety can get.
And then I remembered a story about a woman who got toxic shock syndrome from a tampon left in too long and had her leg amputated. And then the fears began.
I remember squatting down to the search for a tampon that I couldn’t find, googling how to find a lodged tampon. I went to the doctor the next day who found nothing but a cervical infection from poking around too much. It was a relief. But then the fear of amputation crept in.
I decided to stop wearing tampons completely because I didn’t want to risk anything – even though logically I knew the risk of TSS was very rare. But my panic was no longer just centered around tampons. Suddenly, my mind moved to meningitis and septicemia.
I remember having read so many articles where people have had limbs amputated due to meningitis. Of course, it doesn’t happen to everyone, but my illogical brain wouldn’t recognise that.
Over the space of two months, my fears were out of control.
Every hour, I checked my body for rashes. Any slight mark on my legs and I was convinced it was going to become infected and turn into septicemia. I remember becoming especially triggered when I had a blister on my ankle that wouldn’t heal. I started seeing one of my legs as being bigger than the other, and convinced myself I had a blood clot, and then again thought about that resulting in amputation. I saw doctors and even physiotherapists who told me nothing was wrong. But I didn’t believe them.
My anxiety was so high that I started physically seeing rashes on my feet and my legs that weren’t there. I was constantly in a panicky state, my body in fight or flight mode, totally on edge. I can’t explain how I felt other than I was constantly terrified. I was having nightmares every night and intrusive thoughts of people after limb amputation surgery. I remembered horror films where people had been tortured in that way and the scenes plagued my mind. It was horrendous.
I would constantly Google symptoms of meningitis or sepsis or septicemia and suddenly my body would create symptoms that weren’t actually there. I ended up being unable to cope and went to stay with my mum. Over the space of a few days, from the fear and the crying and the nightmares and the anxiety, I started developing tension headaches, one of which lasted for 12 days. That was it. I knew meningitis started with an awful headache. I convinced myself it was happening. My vision would go blurry and I’d constantly test things like being able to move my neck to see if it was stiff and being able to look at the light. I could do both of these things, but my irrational mind said that it didn’t matter.
It got to the point where I was suffering so much that I ended up going to A&E for help from the mental health crisis team.
I was admitted under the team who came out to see me every other day for a month. In this time, I also got back in touch with my old CBT therapist, who spent months helping me get back on track. Over time, hard work and a lot of help, I learned how to think rationally and how to carry out techniques to deal with my fears. I also went through exposure therapy which included watching documentaries of people who had lost limbs and articles about it too. This was especially hard, but it really, really helped me in the end.
Over the course of a year I started to get back on track. I unmuted the trigger words from my Twitter timeline and after a lot of therapy, it got to the point where I could read articles and watch things involving the things I had been afraid of.
And now, a-year-and-a-half later, the fear has finally gone.
Unfortunately, I still have health anxiety, but nothing like I did. And I realise why I had this form of anxiety, after lots of rational thinking.
The only way I can explain it is in bullet points, because it’s the only way it makes sense.
Three years was a curse.
- After the pneumonia being three years before the bowel removal, I convinced myself that every three years, something worse would happen. For me, the bowel removal was much worse than the pneumonia, and I truly believed that three years was a curse for me.
The amputation fear came from physical surgery
- The chest drain from the pneumonia only left me with one tiny scar so it never bothered me. But the stoma bag left me with a huge scar from my sternum to my pelvis, and another horizontal scar on the right side of my abdomen as well as keyhole scars from the removal of the appendix. This was a surgery which affected how I viewed myself physically – which is where the health anxiety came from. I was obsessed with fearing another surgery which could affect me visually. I wasn’t scared of dying, just of going through the first trauma I felt when waking up and looking down at my stoma bag for the first time. I’m not exactly sure why my brain chose amputation of the legs over the arms, or of more abdominal surgery or facial surgery, but it did. And it was hard.
I was actually suffering from PTSD
- My health anxiety was actually PTSD-related. It didn’t stem from nothing. It stemmed from the misdiagnosis. My pneumonia hadn’t been treated properly and then my lung collapsed. I had been misdiagnosed for two years prior to my bowel surgery before having it removed. And now, I get terrified that doctors aren’t getting it ‘right’, and therefore it will get too late, I will be repeatedly misdiagnosed and I will get so sick that I need to have a life-saving surgery. A part of me is still convinced this is going to happen again.
It took me a while to figure this all out, but once I did everything became clear and I started to understand my thought process. It may sound silly to some, but it was all so real for me and was an absolutely horrible experience.
I am still dealing with the anxiety, and I do have relapses sometimes but as I mentioned it’s nowhere near as bad as it was back then. As the fears led me to being so afraid that I became heavily suicidal, I’m glad I sought help when I did, and I was lucky to have an amazing therapist.
If you are suffering from health anxiety, know that you are not silly or stupid. It is a real, debilitating mental health condition and you need help for it. If you feel you are suffering, go to your GP and ask to see a mental health professional. Seek out local therapists. And if you need to talk, call Samaritans on 116 123.