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Relationships can be tricky in a world of rare disease

Heather Delaney

When you are a kid, you have no worries. You have plenty of friends both in and out of school. You can play in the park, play sports and hang out in each other’s houses. Life was fun and carefree right? 

When your life changes overnight, nothing can prepare you for what lies ahead. There is no training or guidance, you just have to deal with each challenge head on.

At 10 years old I was diagnosed with a rare bone disease. In those days there was very little information available and I was told that the disease would burn itself out when I stopped growing. As a young child at primary school I would fracture and recover very quickly and return to school and be with my friends. Apart from my parents being overprotective, life was still good.

As I became a teenager, I faced lots of issues. I had more frequent fractures which needed more recovery time. This caused me to have lots of time off school and I couldn’t catch up with the work. When I went back to school, I found that my friends had moved on and I found it very hard to fit in. It got harder every time. I was bullied and as soon as I did my exams I left with only basic grades. I am a gentle and quiet person by nature, but having an added illness made me an easy target. This experience left me scarred and in later life it returned to haunt me.​

During my late teens and early twenties I had a stable period with no fractures. I went to college, started working, made lots of new friends and I had a great social life. Life was good, I could live more like a normal person. I had regular check ups at the hospital and they told me to get on with my life.

One day when I was 25, I was in the supermarket and I felt the pain of a fracture and it all came flooding back. I was hoping that the doctor was right when he said the disease would burn itself out. He was wrong, it was the start of many more operations. My life changed again and I had to find the strength to carry on.

That familiar feeling of not fitting in with friends returned, they were busy getting on with their own lives and I just couldn’t compete with them. 

Even today it’s still the same. My operations are massive, horrific to some people, and I know that they are terrified in case I ask them for help. Once they see how bad I am they run for the hills, I can see it in their faces. It’s not really their fault, it’s just not their experience.

People assume that if you have a disability, it should be visible to everyone.

I like to think that I am a good friend, very loyal. I call and text regularly and if someone needs help I am there. If one of them is ill and not able to go out, I understand. There are times when I am in too much pain or too fatigued and I am unable to go out, but people just don’t understand. I look normal to most people and unless I have a fracture, there is nothing to see. People assume that if you have a disability, it should be visible to everyone. I have been accused of being awkward and a drama queen so many times in my life I have lost count.​

It took a while but I have learnt how to deal with this over the years. Rather than make a fuss, I just slowly slip away, it’s really not worth the stress and worry.

I still feel socially awkward and my confidence is pretty low. When I am around people I sometimes feel as if I don’t have anything interesting to talk about. Everyone has a busy work and social life and I am trying to get through each day managing pain and fatigue. You don’t realise it at first, but you are being left behind.

​I decided that I wanted to change things and I did that by joining a patient group for my disease (Fibrous Dysplasia Support Society UK) in 2007 and I have never looked back. There is a whole community of people just like me, with all of the same issues.

If I need some help or advice I reach out and someone will always respond. If I feel a bit low, someone will always offer encouragement. Everyone understands, they get it and there is no judgement. In a lonely world, there was suddenly light. There are some things that only a rare disease patient can understand, other people say they do, but they really don’t.

I do still struggle with friendships and relationships and the trust and confidence issues are still there, but they are getting better. Walking into social situations is difficult as I have anxiety. I am no longer scared of telling people about my illness, it’s their choice whether they want to believe it or not. Since joining the patient group I am much happier and I have a few close friends who accept me as I am.

When I look back over my life, I am grateful for all of the things that I have managed to achieve. Life doesn’t have to stop, it can continue in a different way. 

​Being rare means that I can adapt to the changes in my life. I may be a bit different from other people, but I am strong. With the right people around you – you can be strong too.

For more information about ​Fibrous Dysplasia Support Society UK

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