I had an Invisible Disability which I kept hidden for over 33 years, only the people closest to me knew how much I was sufferring. I had suffered from constant 24x7 Severe Pain which is an invisible illness, I didn't limp or show any outward signs of the pain I was in, not even my Doctors or Consultants would believe that I was in so much pain and as such I wasn't given access to Pain relief that would control my condition. Although I excelled at my job in PwC even though I had to put 4 x the amount of effort that my colleagues did but I was proud that I could live a 'normal' life.
Then 4 years ago my condition rapidly deteriated and I lost my mobility, I was forced to work from home permanently. At about the same time I saw a fantastic Pain Consultant who finally diagnosed my condition, it was a rare illness called Ehlers Danlos Syndrome, I also have Fibromyalgia and Reflex Sympathetic Dystrophy (RSD) in my upper body and hands, he explained that most GP's / Consultants wouldn't come across it in their lifetimes but waiting 33 years for a diagnosis was a bit extreme! He immediatly gave me decent pain relief and overnight my Doctor's went from not believing me to giving me access to the best treatment. My condition continued to deteriote, I spent many days in bed being sick from the pain and screaming because I was in agony, I could only be on my feet for 30 secs before the pain got dramatically worse. I beacme a fulltime wheelchair user, I developed a serious infection in my left leg which hospitalised me for an emergency operation during which I was technically dead because the morphine in my body reacted with the anaesthetic and stopped my breathing. I had to have a 2nd operation to close up the wound but because of my EDS I can't have skin grafts and I suffer from poor wound healing. I spent almost 5 weeks in hospital and when I was discharged my pain got even worse, my consultants were worried that the infection had spread to the bone. Almost 12 months to the day of my emergency operation I was admitted to hospital again with an infection in the same place, the infection has destoyed 90% of my patella tendon, I was treated with IV antibiotics for 4 weeks then had another operation to clear up the internal damage, there is very little left in my knee except for bone, some tendon and ligaments.
Luckily this time they managed to get all the infection and my pain improved a bit after I was discharged. It took me 10 months to recover from my operation because of my poor wound healing from Ehlers Danlos. I am under the remit of a Pallative Care Doctor who is in charge of my medication, my meds are so strong that they would normally only be given to someone who had terminal cancer, my pain is the equivalent of someone with bone cancer. The dosages have too be carefully monitored as the risk of overdose and death is extremely high but it means that on a good day I get 45% pain relief and on a bad day about 10% which is better than I've ever had before, there is no such thing as 100% pain relief for someone like me. I also have a Pain Management team who are available 24x7 should I need them for advice or emergency meds, My GP is fantastic and as I am the expert in my illness (common with rare illnesses) he is always open to suggestions and discussion.

It has been very difficult for me and my family to come to terms with my illness and disability, things we once took for granted need to be planned with military precision, travelling is really hard for me and flying is almost impossible because of the extra pain it causes me.I was depressed during my time off-sick which made my condition worse.

After almost 2 years off-sick I awent back to work on a gradual return to work, I work for Price Waterhouse Coopers in Canary Wharf, before I went sick I had a high flying career as a 'Messaging and Collaboration Technologies Consultant' (email, internet, intranet, extranet, reporting tools, web stats, sql server etc) initially working 3 days a week mon, weds, fri. Unfortunately after 4 months I discovered another infection and I had to stop working as I couldn't control the pain, currently I'm having treatment for Osteomylytis (Bone infection) which is an incurable condition. If my health improves enough I hope to return to work in 5-6months for 1-2 days a week. My overall health is unstable (most of the time) but I am very positive about the future, my motivation is extremely high and I'm looking forward to resuming my career at PwC asap. I don't expect preferential treatment at work, I have enough determination to do my job to the best of my ability despite my disability. But it does take four times the effort for me to do my work as my colleagues. In the months before I had to go off sick again I had my appraisal, I received a 3 which means I had been doing my job well and sometimes exceeding it, this in itself is a marvellous achievement!

There is a fantastic website called 'But you don't look sick' and it has a very good letter called the Spoon theory that sums up what it's like to have an invisible illness. My prognosis is impossible to predict, my Pain could deteriate more or I could improve as I get older, I have a very high pain tolerance but like most things pain is subjective and what I call agony might not be the same level of pain that you would call agony. My normal pain level is #7 on the pain scale, it would be a similar amount of pain to someone that badly breaks their leg ie. bone protruding.