Carol's Story
Sadly, my story in none too original. I wish I could say I was the only one to have experienced incorrect and delayed diagnoses, ignorance and the struggles of living with invisible illnesses.
I was 19. Employed, sickly-sweet in love, and finally learning some degree of happiness. Life was just getting close to being good, until it wasn’t. It all seemed to happen almost as if overnight. Coincidence or not, I was prescribed iron supplements for anaemia and shortly after found myself constipated for the first time in my life. This would be the start of a slope downhill on daily laxatives and countless trips to the GP. I was increasingly tired, my periods stopped, I lost a lot of weight. My gut was giving me daily grief with additional pain and bloating, and it was having a huge impact on day to day life. I was different back then too, far more reserved and shy, so the levels of embarrassment were off the scale. First went the stable relationship, then the job, then the friends and any kind of life I had. I used my savings to complete a First Class Psychology degree with Honours from home because I couldn’t go away to University in the state I was in. In these three years, I had the same responses from doctors:
You’re too young / it’ll get better / you must have an eating disorder / it’s in your head / you’re just stressed / you’ve just got in to certain habits / it’s probably ME / “stop trying to find problems where there aren’t any”.
I moved to a new town and changed GP, saw countless different doctors who all offered the same blasé advice:
Eat more fibre / drink more water / eat at the same time every day / exercise and a balanced diet / put on some weight again / taking high dose stimulant laxatives daily for the rest of your life would be “perfectly safe” / eat several of kiwis (that’s a new one!) / go to the gym to get more energy.
I was practically blackmailed into seeing both a counsellor and a dietician in return for seeing at least a gastroenterologist. Both said they were baffled as to why I was there as I obviously needed medical assistance, and yet still no referral was made. No one even checked the basics, like Vitamin D or thyroid for my exhaustion for years.
Then a miracle: a GP who was open-minded and actually willing to listen. She was shocked at the state I was in, believed me rather than considered me a hypochondriac, then admitted she didn’t know everything. She took on board my suggestions, ordered tests and requested referrals. Later down the line, I used my otherwise useless gastroenterologist to request specific tests I thought may be useful. This whole process still took a good few years, and was far from plain sailing!
I researched, bought and tried everything I could find, but I was still going around in circles and getting nowhere fast. Years had gone by, but things were just getting worse.
And now I’m here. In the last 3 years, I’ve had countless tests, felt that I’ve lost every shred of my dignity. I’ve had a few diagnoses and have dealt with various symptoms and problems, for instance pernicious anaemia, iron deficiency anaemia, hypothyroidism (now being debated), amenorrhea, pelvic floor problems, colonic inertia, chronic Vitamin D deficiency, pain, chronic fatigue, and osteopenia. I’ve struggled through eating disorders in my earlier teen years, and then anxiety and depression more recently as a result of my situation. The knock-on emotional impact from years of poor health that has got worse through lack of medical help has been immeasurable.
I’ve had three surgeries this year, undertaken a stressful complaints process with a private hospital, struggled financially, stressed about my job and my future. I now have an ileostomy, so I’m coming to terms with living as an ostomate, even though Frank and I are not quite the best of friends just yet. I’m still dealing with a lot of my other symptoms, from headaches to exhaustion, and investigations are ongoing.
For me, it’s as if I’m having to rebuild a good portion of my life from scratch given how much of it I’ve lost over these years, and it’s not easy.
I’m learning that it’s okay to not be a poster girl or guy for coping with your health issues. It’s okay to be exactly who you are, where you are, and to be going at your own pace.
Over these 9 years, I’ve become more confident and assertive, and have educated myself on a range of health issues. I’ve learned that you may never get a full reason or explanation for your health condition. I’ve learned that the system can fail you, but that there are ways around it and ways to work with it to make it work better for you if you persevere. I’ve learned that it is important, not selfish, to put yourself and your health first.
There may not always be an answer or solution to our problems, nor a cure for other people’s ignorance, but our health is worth fighting for. By educating and empowering ourselves, and navigating the health care system more effectively, we can better try to help ourselves, to cope and to live again. When life gets tougher, get stronger.
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