I was diagnosed with lupus, (SLE), in 2007 just two weeks before my GCSE’s started at the age of 15. I had been poorly and under the treatment of Great Ormond Street Hospital for around two years previously, with an initial diagnosis of Raynaud’s. They had given no indication to me that they suspected lupus, so the diagnosis came as a great shock.

When my mum informed my school of the matter, we applied for exam concessions which were declined by the boards, apparently, this wasn’t a good enough reason to cause impact to my exam performance and therefore life at school seemed to carry on as if nothing was happening. They were good with days off for hospital appointments and understood when I would fall ill more regularly than my peers, but the subject was never breeched.

I had completed the Bronze Duke of Edinburgh award before diagnosis and was embarking on the Silver award when I was approached by the Head DofE Officer at our school. She told me that she had been informed of my diagnosis and that she, too, had lupus. I was encouraged by her approach to see that there was somebody around who would understand and be there to support me. I could not have been more wrong. On the DofE Silver Expedition, I really struggled. I had started to experience severe shin splints which sent agonising pain through my legs as I walked, a friend helped me during the walk by bandaging my legs in the hope that it could help control the pain. About halfway through the second day we had met up with the woman in question and I asked her if I could go back to the campsite in the van as I was in too much pain to carry on, and she refused. I was dating somebody in another group at the time and she accused me of wanting to get back just to see him. I had to carry on walking the final five miles that day in agony, grateful for the support of my friends.

Our second trip was set in late winter and during the walk, we experienced an unexpected snowstorm, the paths were icy, and I was dreading the idea of sleeping in a tiny tent covered in snow. I begged her to let me go home in fear of getting ill, and she refused, eventually I phoned my mum who, with my grandad, came and picked me up, refusing to accept the leaders protests that I needed to stay.

I wish I could say that these were the only problems I faced with her, but when I wanted to take part in the Gold Duke of Edinburgh Award expedition, she found a way to kick me off the trip, in turn meaning that I was unable to complete the award.

After this my mum started dealing with my Head of Sixth Form and we couldn’t have had more support from her if we tried. We worked out a way with my timetable to allow me extra sleep in the mornings when I had free periods, she was always checking how I was doing and whether she could do more to support me. When I left at the end of my A-Levels my mum bought her a huge bunch of flowers to say thank you and I think all three of us just stood outside her office and cried. I still talk to her now and was Bridesmaid at her daughter’s wedding last summer. She still asks how I am, and she always tells me how proud she is of me now. Her support made life a great deal easier during my last years at school, she got me concessions for my exams and kept all my teachers informed so that I never had to have multiple conversations with them.

My education took a long break after I left school, I moved to Bath and worked in retail for several years before I had to give up work and move back home. My lupus had flared up severely and it took two years to get it back under control and regain body strength.
I broke this fast with a Foundation Degree in Architecture at a University in London. I had an introductory meeting with the disability team to discuss my needs and how they could make the course accessible for me, and this was followed up with a long assessment for my Disabled Students Allowance. The assessor was fantastic and got a true understanding of my lupus and needs; he arranged for certain equipment and software to be provided as part of my allowance that has helped me massively during my time at university. I am able to work from my room on bad days, rather than trying to struggle in to class.

The Head of Year for my course could not have been more supportive of me, we were in constant communication about my health and what could be done to help. He allowed me to cut my days in half rather than four full days a week. Attending the full timetable was incredibly difficult for me, but reducing these days improved my health and allowed me to keep the standard of my work up and meet deadlines in time. I’m still grateful for the help and support I received from him. Sometimes, when you have a disability, there are people during your life who hold a special place in your heart because of the support they give you. It’s often the case that one is left struggling to keep up, whilst simultaneously battling with superiors who do not offer support and challenge you.

During my lowest point in my Foundation Year I had a meeting with the disability team to ask for advice on what I should do, and without hesitation the officer told me to drop out. There was no discussion, no trying to find other options, or offering comfort and support that this may pass. I was told point blank to leave University. Obviously when I talked to my Head of Year he was mortified and convinced me to stay and I’m so glad he did. At the end of the year I got amazing results and even won the Foundation Prize, and never in my life had I ever been so proud of myself. At school I was an underachiever, I was ashamed at my results, but now I was facing my health straight on and challenging it. I was saying to the world that yes, my lupus can rock my world, and I will always find things infinitely harder than my peers, but that does not mean that I am inferior.

I am now in my first year of Undergraduate studies in Architecture thanks to the support and encouragement I received from my previous tutor. I had taken this for granted and when I started here, and I was rocked to my very core by the attitude of the higher levels of staff at my new University. There are three sides of life at this university: my Degree, The Disability Assessors, and the social life.

My degree is intense, and this is to be expected from an Architecture degree, however when I approached the relevant person in our school, I didn’t receive any support or encouragement. I felt so deflated after this meeting and was at odds of what to do, my health was being affected by the packed timetable and overlapping deadlines and, as a result, my mental health began to suffer. I sunk in to a state of extreme anxiety and depression, I felt I had nowhere to go and nobody to turn to, as whenever I raised the issue with our Head of Year I was ignored.

I tried to run for Student Representative as I had been one at my previous university, and I was told not to go forward because of my lupus. I have faced a great deal of discrimination and challenging by authority figures in my past employment in retail, but this is one thing you don’t expect to happen when you’re in an educational setting. You expect to be supported, encouraged, and lifted to be the best person you can. I was made to feel the opposite of this, like I was being told that I can’t do these things because I have lupus.

In my years of living with lupus I have been able to grow a thick skin, when people tell me I can’t do something on account of my health, I prove them wrong, and I fight for my rights and the rights of others with disabilities who want to do the same things that I do. I am facing constant challenges in this course, but luckily, given the lack of support I receive within the school of architecture, the Disability and Welfare team at the university are incredible.

I have an individual Disability Assessor who I can turn to when I have complaints, when I need support, or I’m concerned about a deadline. She makes it clear that she is on my side, and when you feel as though you are fighting for your rights to do the course, it makes a huge difference to have this external support.

When I was doing my foundation year I was in a class with many people of a similar age, and my social life was never a big problem as many of my friends were like me in that they didn’t want to go partying every night. When I came to my current University I was immediately thrown in to a true ‘uni’ life. Many, if not all, of my friends are younger than me. I am 26 now due to the delays in being able to finally make it to this point in my life, and it is glaringly obvious to me, the differences between my story, and the stories of my friends, who are here straight from school. At first I was trying to keep up, to go out often, to spend time doing certain things that people want to do when they have moved away from home for the first time. It has taken me a long time to find a good group of friends who are sympathetic, who don’t get annoyed when I don’t want to go out clubbing with them, and who make sure that I am looking after myself.

I think it is still hard for them to understand everything that comes with my lupus and other health problems, but this is part and parcel with invisible disabilities. I spend a lot of time asking for help from them, and there was a time in my past when I massively struggled to be honest when I couldn’t do things. There is a fear of missing out when your friends are going out clubbing, or you’re too tired to join in with whatever activities they are doing. It takes strength to overcome this, and to know that missing out on these things, doesn’t mean losing your friends. If they are true friends, they understand, and they will find ways to do things with you that you are able to do.

There is something in your gut that can tell you who will be there to support you, to lift you up, and help you. That same gut will tell you the people who aren’t going to do these things. Then it’s down to you to find the first people. They are invaluable, especially during education. University can be an incredibly lonely experience, especially if you feel that you are not getting support from the authority figures. It’s about learning that where there is no support, you can find other support. Keep fighting, keep working, and always know that whilst a life with lupus can be debilitating at times, from it can grow a strength and passion that no other will know. Use every experience as a learning tool on how to adapt and make sure that you are heard, that people are listening to you. Most of all, keep going, never give up.

Amy Baker