Good news! We have done some tests and there is absolutely nothing wrong with you
People call me beautiful. Friends tell me how jealous they are of my thick shining hair, my perfect size ten figure and gym toned arms.
Perhaps this is why when I would go to doctors, with desperate assertions of my chronic pain, they would reply with, “So you are suffering discomfort.” or my favourite, “Good news! We have done some tests and there is absolutely nothing wrong.”
Perhaps that is why, when I told friends of my stomach aches and my migraines, they would laugh and tell me I was a hypochondriac.
At sixteen I was diagnosed with IBS. I was told I needed to keep control of my diet, although no more information was given. No indication of what food to exclude or how to find out what my triggers were. Just the cold hard facts that if I had a flare up it was my fault for not managing it. I never thought badly of the doctor for this, he had a long list of patients with much worse conditions. Why would he have much time to deal with a young girl who was for all intents and purposes, very healthy.
I spent my 20s through good times and bad. I’d have flare ups and lose lots of weight, have years when I’d vomit from a single glass of wine. But I could deal with it. And there was the upside. I reached my 30th birthday with the same waste line that I had when I was 16 – and people thought it was fantastic. Beautiful, they said.
At 30 interstitial cystitis was added – I would lock myself into the office toilets and weep into my hands. The pain seemed unbearable. Then came the incontinence. I went to a long line of specialists. Bladder training was used – I was told that often the root cause was that women use the toilet too often, and in doing so women inadvertently caused this condition. I just ‘thought’ I needed to pee, apparently. In a way it did help. Now I can bear the pain. Even if it feels like daggers are tearing through my urethra, I can choose not to go to the loo.
At 34 we started trying for a baby. It was slow, as it was not very often I would allow anything to touch my pelvis, swollen and painful as it was. But after 2 years we fell pregnant. We were so excited but the pain was terrible, all through my abdomen. My midwife seemed too busy to ask. She rushed me through, skipping half the medical history questions. She noticed the distressed look on my face when I tried to push for more information, but all she could say was, “It’s normal to be anxious with your first. But you’ll be fine, you’re healthy.” My stomach was too painful to touch, I felt like fainting.
Finally the 12 week scan came around. I’d miscarried 6 weeks earlier – the pain in my abdomen had been trying to tell me so, but it was all just one ball of pain. The same pain that since I was 16, I had been told was not really pain at all.
Sadly things got worse, as the miscarriage turned septic and I was rushed into hospital. Nurses scurried around me with concerned faces, connecting me to all sorts of beeping machines. To my surprise, I was offered super strong pain killers, along with sympathetic eyes. Was I now in pain? For me the physical pain was no worse than flare ups I’d dealt with for all my adult life. After all, I just had a low threshold to pain, didn’t I? But this was a diagnosable thing – a definitely painful thing, and I was given the works!
I’m 37 now. Two miscarriages down, 2 stints in hospital for infections and sepsis, 1 year in self-isolation for a chronic infection, and a tonsillectomy. Doctor’s have started to begin their sessions with by saying, “I’m sorry for everything you’ve been through”. It’s a strange turn of events. I think somehow my medical notes have tipped the balance to be somebody who probably does know what real pain is.
I went to the doctor’s this week, my foot hurt. For no apparent reason I couldn’t walk on it. I am no longer able to judge how much pain I am in. Those years of giving scores out of 10 feel pointless to me. So many years being told I was wrong – I have lost any self belief in what pain really is. But I knew it was bad as I had begun to lose the ability not to cry. I hobbled in to see a private physician – having given up on the NHS’s week long waiting list. The doctor peered down at the swollen toe. “Oh nasty, that looks like classic gout, unusual for a healthy young woman to get it.”
I suspect that generally is the problem – I am not quite as healthy as I might appear.