Page 26 - N&V Winter 2019

Education and Life with Lupus - Amy Baker

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
Raynauld’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 way to kick me off the trip, in turn meaning
matter, we applied for exam concessions that I was unable to complete the award.
which were declined by the boards, After this my mum started dealing with my standard of my work up and meet
apparently this wasn’t a good enough Head of Sixth Form and we couldn’t have deadlines in time. I’m still grateful for the
help and support I received from him.
reason to cause impact to my exam had more support from her if we tried. We Sometimes, when you have a disability,
performance and therefore life at school worked out a way with my timetable to there are people during your life who hold
seemed to carry on as if nothing was allow me extra sleep in the mornings when a special place in your heart because of
happening. They were good with days off I had free periods, she was always the support they give you. It’s often the
for hospital appointments and understood checking how I was doing and whether she case that one is left struggling to keep up,
when I would fall ill more regularly than could do more to support me. When I left whilst simultaneously battling with superiors
my peers, but the subject was never at the end of my A-Levels my mum bought who do not offer support and challenge you.
breeched.
her a huge bunch of flowers to say thank During my lowest point in my Foundation
I had completed the Bronze Duke of you and I think all three of us just stood Year I had a meeting with the disability
Edinburgh award before diagnosis and outside her office and cried. I still talk to team to ask for advice on what I should do,
was embarking on the Silver award when I her now and was Bridesmaid at her and without hesitation the officer told me
was approached by the Head DofE Officer daughter’s wedding last summer. She still to drop out. There was no discussion, no
at our school. She told me that she had asks how I am, and she always tells me how trying to find other options, or offering
been informed of my diagnosis and that proud she is of me now. Her support made comfort and support that this may pass. I
she, too, had lupus. I was encouraged by life a great deal easier during my last was told point blank to leave University.
her approach to see that there was years at school, she got me concessions for Obviously when I talked to my Head of
somebody around who would understand my exams and kept all my teachers Year he was mortified and convinced me to
and be there to support me. I could not informed so that I never had to have stay and I’m so glad he did. At the end of
have been more wrong. On the DofE Silver multiple conversations with them. the year I got amazing results and even
Expedition I really struggled. I had started My education took a long break after I left won the Foundation Prize, and never in my
to experience severe shin splints which sent school, I moved to Bath and worked in life had I ever been so proud of myself. At
agonising pain through my legs as I retail for several years before I had to school I was an underachiever, I was
walked, a friend helped me during the give up work and move back home. My ashamed at my results, but now I was
walk by bandaging my legs in the hope lupus had flared up severely and it took facing my health straight on and challenging
that it could help control the pain. About two years to get it back under control and it. I was saying to the world that yes, my
half way through the second day we had regain body strength. lupus can rock my world, and I will always
met up with the woman in question and I find things infinitely harder than my peers,
asked her if I could go back to the I broke this fast with a Foundation Degree but that does not mean that I am inferior.
campsite in the van as I was in too much in Architecture at a University in London. I
pain to carry on, and she refused. I was had an introductory meeting with the I am now in my first year of
dating somebody in another group at the disability team to discuss my needs and Undergraduate studies in Architecture
time and she accused me of wanting to get how they could make the course accessible thanks to the support and encouragement I
back just to see him. I had to carry on for me, and this was followed up with a received from my previous tutor. I had
walking the final five miles that day in long assessment for my Disabled Students taken this for granted and when I started
agony, grateful for the support of my Allowance. The assessor was fantastic and here, and I was rocked to my very core by
friends. got a true understanding of my lupus and the attitude of the higher levels of staff at
needs; he arranged for certain equipment my new University. There are three sides of
Our second trip was set in late winter and and software to be provided as part of life at this university: my Degree, The
during the walk we experienced an my allowance that has helped me massively Disability Assessors, and the social life.
unexpected snow storm, the paths were icy, during my time at university. I am able to
and I was dreading the idea of sleeping in work from my room on bad days, rather My degree is intense, and this is to be
a tiny tent covered in snow. I begged her than trying to struggle in to class. expected from an Architecture degree,
to let me go home in fear of getting ill, however when I approached the relevant
and she refused, eventually I phoned my The Head of Year for my course could not person in our school, I didn’t receive any
mum who, with my grandad, came and have been more supportive of me, we support or encouragement. I felt so
picked me up, refusing to accept the were in constant communication about my deflated after this meeting and was at
leaders protests that I needed to stay. health and what could be done to help. He odds of what to do, my health was being
allowed me to cut my days in half rather affected by the packed timetable and
I wish I could say that these were the only than four full days a week. Attending the overlapping deadlines and, as a result, my
problems I faced with her, but when I full timetable was incredibly difficult for mental health began to suffer. I sunk in to a
268Cese days improved my
wanted to take part in the Gold Duke of me, but reducing th state of extreme anxiety and depression, I
Edinburgh Award expedition, she found a health and allowed me to keep the felt I had nowhere to go and nobody to
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luPus uK NEWS & VIEWS SUMMER 2019