Welcome back to Spoonie Spotlight, my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks.) If you would like to participate, fill out the form!
What’s your diagnosis?
CRPS (Complex Regional Pain Syndrome)
When were you diagnosed?
How long have you had symptoms?
Have you been limited in any way from your illness? If so, how?
There are some things I’m completely not able to do, some which I can do with adaptation, some which I can do as one offs if I pace myself. But it affects everything I do, although I don’t think this is entirely negative.
What’s your story?
I had an overuse injury in my right foot from dance in the build up to a ballet exam in March 2012, when I was 15 years old. An x-ray diagnosed with a stress fracture, so I rested for about 6 weeks as instructed. After this I went back to dance, but the pain in my foot had spread to a broader area and had become far more intense. Over the next few months, my foot stiffened and changed colour and I was in constant severe pain. It took ultrasounds and MRIs and many other tests showing normal physiology before I was finally diagnosed.
After trailing all the drugs which made me more ill, I discovered a pain management program that taught me to live with pain and fatigue in a more positive and constructive way. At the moment I am probably in my worst physical state- unable to get out of bed about 1/3 of the time and can only carefully do a few hours of gentle activity the rest of the time, which being a student can be a little frustrating. But at the same time I am probably in the most intense stage of personal growth in starting my degree and making new friends and campaigning for equality for people with disabilities.
How has your illness changed your life?
It changed what I wanted to do with my life, as I wanted to dance. It has impacted my education and relationships and family and just about every other aspect of being a teenager and growing up!
What are your goals for the future? (Not related to your health)
Complete my psychology degree.
To become a clinical psychologist, pioneering the use of dance therapy in the UK for physical and mental health conditions.
Get married and have children!
What are your goals for the future? (Health related)
To work on some desensitization and be able to wear certain shoes, walk on different textures.
Ultimately to get better but if not then to keep having a good quality of life and keep doing all the things I can still do.
Do you consider yourself handicapped or disabled? Why or why not?
Yes- by the Equality Act (2010) I do have a disability. Identifiying as someone with a disability, particularly in a university setting, allows me to access support with my studies and also claim DSA (Disabled Student Allowance) which has really helped me.
I also believe in something called the social model of disability, so I probably identify myself as someone with a handicap rather than a disability but I’m still working this all out as I think accepting illness and/or disability is a process.
What would you like readers to take from your experience?
That even if there is no cure for your illness that you can still live a normal life although it might be different to what other people think is successful.
Sometimes, especially after negative experiences explaining illness to others we expect people to react in a bad way and maybe don’t give them a chance to show how understanding and lovely they are.