Wednesday, October 24, 2012

R is for Reality Check.

There is something wrong with me.

I mean, there are probably a lot of things wrong with me. Things that are frequently pointed out are my 'terrible' taste in music, my love for dipping my fries in my sundae, my irrational fear of the telephone, and the fact that I'm actually enjoying living in Rotorua. "What is wrong with you," people cry, and I laugh because these are just little things, the kinds of things that are wrong with everyone.

But not everyone's bodies are slowly eating themselves.

Around two years ago, I started getting really sick. I'd always had a bit of a weird stomach - I have endometriosis, and there had been times in my life where I had been inexplicably ill for a while, but this was something new. There was a swelling, stabbing pain nestled right next to my left hipbone that just wouldn't quit, my stomach was swollen and tender, I was going to the bathroom two or three or four times a day, and every now and then, there'd be blood. I got scared, and one day when the pain got really bad, I took myself to the hospital. I didn't have a proper GP - I was with Student Health, and had never found them at all effective for anything except re-prescribing my contraceptive pill. I don't think, in my five years at uni, I'd seen the same doctor more than twice.

At the hospital, they took a urine sample and a stool sample and a blood sample and told me that I wasn't dying, that I needed my insides looked at, but that because it wasn't mega urgent I would have to go to my GP to get referred. So I went to a GP at Student Health, got my referral, and waited. The pain, the blood, the swelling, came and went. Some days were good days, some weeks were good weeks. Some weeks were write-offs. I kept going to classes, kept writing my thesis, kept seeing my clients, but I was always waiting. And then my appointment came, and I was excited.

I had a flexible sigmoidoscopy. It showed.. nothing. There was nothing wrong with me, it said.

That should have been a relief, but it wasn't. I wanted to call bullshit, but tests are tests. They'd looked inside me with a camera, they took pieces of me and tested me, and it was all fine, and I was devastated. The specialist suggested a low-fibre diet. The GP suggested a high-fibre diet. Neither helped.

I can't remember who first asked if I thought, maybe, it might be psychosomatic, but the second and third soon followed. Maybe it was all in my head? Not that I was imagining the blood, but that it was all a result of my neurosis. My anxiety. Had I considered that maybe I was depressed? I mean, there was nothing wrong with me, so perhaps there was something wrong with me. Suggestions like that are hard to counter, so I started looking for things to blame. I knew that there was something wrong, I just had to find it. I went to the Allergy Food Show, and went to every single talk. One phrase kept coming up over and over again: 'FODMAP'. No wheat, no dairy, no fruits except berries and citrus.. it was a bastard of a diet, but it was getting all these rave reviews for symptoms that sounded similar to mine, so the FODMAP diet it was. And overall, things got better. Sure, I still had pain and occasional bleeding and other nasty bits and pieces, but I felt better, I had more energy, everyone kept telling me that I looked better than I had in ages. 'It's working!' I cried to myself, desperately ignoring the pain and the blood. 'It's working!'. I was occasionally mystified - I'd 'cheat' and feel just fine, I'd follow the diet to the letter and get ill. I persuaded myself to ignore this, to write it off, to explain it away. I plodded along. I even met a boy. A boy who found me attractive even when I felt disgusting, a boy who found recipes that I could eat, and demanded restaurants cook me customised meals, and stayed in with me when I was too sick to go out, and held my hand when I was in pain. And I told myself that it was okay to live like this.

Over the last few months, though, I had to start facing facts. I was in too much pain to work. I was bleeding every day. Eating nothing, eating FODMAP, eating regular person food, it made no difference. I was really, really ill, all of the time. After one particularly awful evening in Wellington, I went back to the hospital. Again: I wasn't dying, and was sent to get a GP in Rotorua to get another referral for another look at my insides. Inside, I was screaming. I'd already done this, I'd already felt the sharp sting of utter invalidation. And now, more than ever, people questioned the basis of my illness. More and more questions about my mental state, from the people who I most needed to believe me.

This time, though, things were different. My GP in Rotorua - my first real GP in six and a half years - listened with a sense of urgency. Her forehead creased. She asked a lot of questions, and her frown deepened. She asked if anybody in my family had the money to send me to a private specialist.

My specialist appointment was less than a month later. His forehead creased, too. Less than 48 hours later, I was being prepped for a colonoscopy.

He found something wrong with me. All this time, there has been something wrong with me. All this time, my immune system has been eating my intestines. I get the biopsies back on the 31st, and then I'll know exactly what's wrong and how I can manage it for the rest of my life. Until then, I'm on a mega dose of steroids and immunosuppresants. I oscillate between the immense relief of feeling validated, and the fear and sadness that comes with being officially damaged, and the utter indignity of having to put steroids up my ass every night, and the dread about the inevitable steroid weight gain and potential moon face. I feel angry at myself for not going back to get more help sooner, I feel gratitude to the wonderful boy who stayed by my side despite having to hear about all sorts of things that no new boyfriend should, and I feel cautiously optimistic about my future. I am having about eight thousand feelings a minute. I'm crying a lot, this week. But some of them are good cries.

I don't know why the first tests didn't find it, but it's there. It wasn't in my head. My pain, in every meaning of the word, was real. And even though that doesn't really change anything, it changes everything.

Reality: checked.


  1. Replies
    1. Diagnosis is fantastic!

      It seems that women's health is constantly questioned like this, like delicate ladies can't possibly understand their own bodies and know when things are wrong. *eyeroll* I have had psychosomatic illnesses, but they generally extend to feeling tired and queasy - I suspect that while it's certainly possible to have bleeding and similar for that reason, it's rarer than people seem to conclude!

      Incidentally, that first symptom you list, the stabbing pain by the left hipbone, is something I get on occasion too - starting with every few/several months to more like every few weeks now, I keep trying to remember to mention it to my GP and I need to go in next week anyway so hopefully this time. It goes along with bowel symptoms too and I did actually mention it once before to a previous doctor - he concluded my digestive system was backed up and gave me some liquid thing that I had to put in water and drink every day to soften the poos. :) I suspect, though, that that was a symptom itself, because I've made efforts to eat more fibre etc and it doesn't help much, and that stabbing pain? It often precedes a horrible constipation-diarrhea duo that basically ruins my whole night. This sort of thing I suspect is probably an area of health that people are relatively unfamiliar with anyway, because usually we try to avoid talking about anything to do with the lower digestive system. It's "Not Done". Even I who try to make a habit of smashing taboos (in the right environment, not say at work or meeting important people) usually say I have stomach cramps, rather than the more accurate bowel cramps. So then, of course, we have no point of reference to know what's normal, so people dismiss worries as not important.

      TANGENT ASIDE. I'm so glad your knows about your body have been validated by SCIENCE, and please don't be angry at yourself, because this shit is systemic and hard to fight and sick people already struggle with so much else that fighting is even harder than it would be otherwise and the costs of getting tests done are high, emotionally and financially, especially when they keep coming back clean.

  2. What's with all the diagnoses of auto immune conditions lately?! You're the third of my friends to fall sick and get diagnosis this year. (If you need their names for discussions about stuff, let me know.)

    Anyway, pleased you have a diagnosis, and are validated, and hopefully can work out a treatment plan that goes OK.


  3. 212: Don't drink tea.

  4. Ahhh. I got pretty misty reading that. I'm seeing a naturopath for a whole range of complaints at the moment, I feel like my story is similar to yours... but not. Comparisons are a weak form of compassion. If I was a praying kind of person I would do that for you, I'm not so I'll just send you some positive thoughs.