NOT being listened to is incredibly frustrating, but imagine being told for years that your debilitating health symptoms are a figment of your imagination.
Former assistant headteacher Jane Green, 59, from Sussex, knows exactly what it’s like to have her symptoms dismissed – even by experts.
Jane GreenJane Green, 59, was finally diagnosed with hypermobility Ehlers-Danlos syndromes after being fobbed off[/caption]
She was told for decades that a variety of health conditions she suffered were hormone related.
It was only much later, in 2015, that she was finally diagnosed with hypermobility Ehlers-Danlos syndromes.
The condition affects connective tissue in the body including tendons, internal organs and mast cells which are responsible for allergic reactions.
“I first started going to the doctors as a teenager, which is where they first blamed puberty,” says Jane, now chair and founder of Sussex Ehlers-Danlos Syndromes and Hypermobility Disorders.
“From constant infections, breathing issues, rashes, IBS bloating, vomiting, headaches, extreme allergies, chronic fatigue syndrome, extreme pain, sprains and dislocations; there seemed to be so many different symptoms I didn’t feel like I was ever taken seriously.
“I’d be told it could be hormone related but not really ever offered further investigations, scans or tests.
“On the rare occasion I was offered more investigations, they wouldn’t find anything and I’d be discharged from outpatient treatment.
“I had some really bad times when I was pregnant with my two sons but again, I was told pregnancy and hormones were the cause of the issues.”
After years of dislocated joints, ruptured tendons and visits to A&E, at 48, Jane was once again fobbed off.
“I’d managed to get an orthopaedic referral from my GP to investigate a ruptured ankle ligament, but she didn’t even examine me before suggesting it could be hormone related.
“She told me we were the same age and perimenopause or menopause could be why I was experiencing weaker joints.
“It felt like the final straw.”
Jane “felt like a hypochondriac” until she was finally diagnosed with hypermobility and Ehlers-Danlos.
She said: “What used to be a fun party trick because I was really bendy and flexible turned into something that plagued my life.
“I’ve had periods where I’ve been in a wheelchair or bed bound. I had to retire early from a job I adored because I was in constant pain.
“If I’d been taken seriously as a teenager, my entire life could have been so different.
“I think it’s easy with women to say things are hormones, but being told it could be hormones almost makes you feel like people are eye rolling at you – that you should get used to it and live with it, that your condition somehow isn’t serious or doesn’t warrant more investigation, when that’s not the case.”
SEEK HELP
London GP Dr Zoe Watson says you should always feel empowered to seek help and medical support.
“Any patient – male or female – who has persistent symptoms they don’t feel have been adequately investigated or diagnosed, is entitled to seek a second opinion – be that from a different GP or from another specialist,” says Dr Zoe.
“It’s worth noting medicine is a game of statistics, probability and puzzle solving – based on information that is presented and probability of a certain diagnosis.
“Many common disorders can present in the same way as rarer things, which can be why diagnosis can take time.
“Patients come to doctors with the jumbled up puzzle pieces – their symptoms and concerns.
“Doctors then take those puzzle pieces and ask a series of open and closed questions in order to try and join some of those puzzle pieces together to get a clearer picture.
“In order for that process to work, there has to be honesty and trust on both sides.”