I am a 22 year old student, fighting several illnesses. In 2010 I had to start using a wheelchair because of the pain and exhaustion I experience. My partner (now husband) has to care for me like a child, he even has to help me wash, dress, and go to the toilet. Pretty humiliating at my age. When you have mystery symptoms like bad pain in your girly area, you lose all dignity- I have had more examinations than I care to mention.
Paul (my husband) and I are both studying at university, but we struggle to keep on top of everything. Paul has to work a lot of hours, alongside studying and caring for me, in order to help support us because we are not entitled to most state help. Like most carers, he became ill with depression, which culminated in him taking an overdose because of the pressure he is under. He is doing better now but he had to resit one year of his degree.
We are not like most students, we couldn’t live with our friends because of my illness. We can’t go out drinking or clubbing or be care-free with our diet. We are not in debt because of careless spending but because of the limitations placed on us mean we could not support ourselves financially for a long time.
We enjoy going to the cinema and watching films. I also love reading, but I struggle to use a book because of the pain in my hands. I was fortunate enough to get funding from my university to buy a Kindle, which I can rest on my knees, so the pain of reading is greatly reduced. I also love art, crafts and pretty much anything creative. When I have energy and can use my hands I love writing. I am a francophile and dreamt of going to Paris on our honeymoon. It didn’t happen in December, but one day we will have a belated honeymoon.
At heart, both Paul and I are very sociable, but I’m stuck in bed a lot. I can’t always use computers and I really struggle with using the phone much, so the best way I keep in contact is good old fashioned snail mail. I don’t mind that part, I’m pretty sentimental about those things.
Paul and I both believe in social justice, I have always had strong political views. When I had to start using a wheelchair and Paul became my full time carer, our eyes were opened to the many ways in which life is made difficult for disabled people and carers every single day. We aim to tackle the little things which make a difference, such as equal access to university societies, proper access in public buildings, etc through our elections as disabled representatives on various committees.
We also lobby the government and politicians about the big issues, such as adequate provisions for care and reforming the benefits system. I don’t expect everyone to agree with me so I’m open to discussion about these issues. I find it emotionally difficult to talk about these things, so for a long time Paul spoke out for me, but I am trying to be more thick skinned now. Something Harriet Harman said in a speech once really struck a chord with me. She was talking about women’s rights but I apply it to all social injustice, paraphrasing, she said that you shouldn’t feel ashamed of harping on about the same issue if it hasn’t changed. You shouldn’t listen to the people who tell you to shut up, because you are not doing this for yourself, you are doing this for every person affected. If you don’t do it, who will?