I was born with a large Cavernous Haemangioma Lymphangioma on my right thigh spreading around to my right lower back, which impinges on my spinal canal. There is also a large portion internally surrounding my right kidney, through my right inguinal canal and up to my diaphragm. This is a benign tumour of blood and lymphatic vessels.
As a young child, the surface of the tumour was discoloured and covered with many blood blisters which would burst regularly on to my clothes. The size of the tumour can vary depending on how active I am, whether I have an infection or allergies and sometimes for no obvious reason. It often becomes red, swollen and tender due to an internal bleed within the tumour.
I’ve had numerous operations, mostly as a very young child and a couple as an adult. These have left me with multiple scars including two very large ones.
When I was 11 years old, in 1975, my consultant sent me for radiotherapy. This was a new treatment back then and sadly it caused me numerous problems and did virtually nothing to help my condition. It did dry up the surface of the tumour and improve the colour. However, it caused severe lumbar scoliosis, kyphosis, tilted pelvis and flexion deformity of my right hip. I had to wear a brace from my hip to my neck until I was 18 years old. I couldn’t have corrective spinal surgery because the tumour was all around my spine and they were worried about excessive bleeding.
John’s Cavernous Haemangioma Lymphangioma is on his right thigh and lower back
I was very quiet and shy at school, and some kids could be very cruel. However, it wasn’t just the children, a PE teacher also really upset me. Due to the risk of internal bleeding, I wasn’t allowed to take part in PE, which also added to my psychological woes. This teacher felt justified to put P & D on my school report (poor effort & below average achievement) even though I hadn’t done any PE. It spoiled my otherwise good report. It may sound daft, but that small thing had a considerable effect on me, and I still haven’t forgiven him nearly 50 years later! A seemingly casual comment or action can have long and far-reaching effects on a person who may be emotionally vulnerable.
Over the decades, gravity has made my scoliosis get worse and now my bottom rib rubs against my hip bone. People stare at me wherever I go and sometimes they even stop walking so that they can watch me better! In the last few years, the blood blisters have started to come back on my thigh, and the consultant doesn’t know why. One or two have burst on to my clothes but I’m hoping it doesn’t get any worse.
My whole life I have struggled with self-confidence, self-esteem and poor body image. I was particularly depressed during my late teens and twenties when all my friends were in relationships, and I was alone. While I did meet girls who were interested in me, and despite being desperate for love, I’d push them away because of my fear of rejection when they saw my tumour. I really regret not asking for counselling when I was young; I think it would have helped me a lot.
I did finally get a girlfriend when I was 27 years old and I am now happily married. My wife is also disabled, and we met online via a dating site for disabled people. We had both decided to join this site as we thought people who were disabled themselves would be more understanding and accepting of someone else’s disability.
Recently I came across Changing Faces. I asked for a Skin Camouflage appointment and the practitioner I saw was wonderful! She was very kind, empathic and knowledgeable.
For 26 years, I worked within the NHS. My lack of self-esteem did hold me back a little, but I managed to make myself try for advancement. Part of my job involved patient and staff training, and I found speaking to large numbers of people very difficult. I was far better at one-to-one training. There were aspects of my job I couldn’t do as it involved too much walking i.e. seeing inpatients. However, I more than made up for it by treating high numbers of patients in an outpatient clinic and in their own homes.
Despite my dedication and hard work, I felt manoeuvred out of my job. Instead of helping me, the management put obstacles in front of me and in the end, I took early retirement. Working was a real physical challenge to me, so the last thing I needed was anything which made it harder. I loved my job and still miss it 14 years after retiring.
I’ve had counselling over the last 15 years which has helped me with my confidence, but I still struggle in certain scenarios. For example, I used to like going swimming and was upset when the single changing cubicles were changed to communal. This really put me off going because people would stare and make nasty comments or ask intrusive questions.
I’m not a confrontational kind of person, so generally I try to ignore people who stare but if they are acting a little “extreme” then I’ll stop and stare right back at them. If people ask me questions, I try to politely answer them briefly. On very rare occasions, I have had to be a little more forceful and tell them that their question is inappropriate and upsetting.
It is only recently that I came across Changing Faces. I hesitated to contact them because my condition is not on my face. However, eventually I did ask for a Skin Camouflage appointment and the practitioner I saw was wonderful! She was very kind, empathic and knowledgeable. She showed me how to use the make-up, and it has really boosted my confidence. I feel much better about sharing a changing room which has enabled me to go swimming regularly again.
Nowadays, my wife and I look after each other and try to make the most of our lives despite our disabilities. We love the countryside, seeing family and friends, concerts, the theatre, lunches out and holidays. Having a visible difference or disability doesn’t have to stop you from keeping a full calendar!
