Page 27 - N&V Winter 2019

turn to, as whenever I raised the issue with was in a class with many people of a everything that comes with my lupus and
our Head of Year I was ignored. similar age, and my social life was never a other health problems, but this is part and
big problem as many of my friends were parcel with invisible disabilities. I spend a
I tried to run for Student Representative as
I had been one at my previous university, like me in that they didn’t want to go lot of time asking for help from them, and
and I was told not to go forward because partying every night. When I came to my there was a time in my past when I
of my lupus. I have faced a great deal of current University I was immediately thrown massively struggled to be honest when I
discrimination and challenging by authority in to a true ‘uni’ life. Many, if not all, of my couldn’t do things. There is a fear of
figures in my past employment in retail, but friends are younger than me. I am 26 now missing out when your friends are going out
this is one thing you don’t expect to happen due to the delays in being able to finally clubbing, or you’re too tired to join in with
when you’re in an educational setting. You make it to this point in my life, and it is whatever activities they are doing. It takes
expect to be supported, encouraged, and glaringly obvious to me, the differences strength to overcome this, and to know that
lifted to be the best person you can. I was between my story, and the stories of my missing out on these things, doesn’t mean
made to feel the opposite of this, like I was friends, who are here straight from school. losing your friends. If they are true friends,
being told that I can’t do these things At first I was trying to keep up, to go out they understand, and they will find ways to
because I have lupus. often, to spend time doing certain things do things with you that you are able to do.
that people want to do when they have There is something in your gut that can tell
In my years of living with lupus I have been moved away from home for the first time. It you who will be there to support you, to lift
able to grow a thick skin, when people tell has taken me a long time to find a good you up, and help you. That same gut will
me I can’t do something on account of my group of friends who are sympathetic, who tell you the people who aren’t going to do
health, I prove them wrong, and I fight for don’t get annoyed when I don’t want to go these things. Then it’s down to you to find
my rights and the rights of others with out clubbing with them, and who make sure the first people. They are invaluable,
disabilities who want to do the same things that I am looking after myself. especially during education. University can
that I do. I am facing constant challenges in I think it is still hard for them to understand be an incredibly lonely experience,
this course, but luckily, given the lack of especially if you feel that you are not
support I receive within the school of getting support from the authority figures.
architecture, the Disability and Welfare It’s about learning that where there is no
team at the university are incredible.
support, you can find other support. Keep
I have an individual Disability Assessor who fighting, keep working, and always know
I can turn to when I have complaints, when I that whilst a life with lupus can be debili-
need support, or I’m concerned about a tating at times, from it can grow a strength
deadline. She makes it clear that she is on and passion that no other will know. Use
my side, and when you feel as though you every experience as a learning tool on how
are fighting for your rights to do the to adapt and make sure that you are
course, it makes a huge difference to have heard, that people are listening to you.
this external support. Most of all, keep going, never give up.
When I was doing my foundation year I Amy Baker

Katty’s territory

Shared Experiences and Advocating

When I reflect on my journey with lupus, I think about who or what
would have made the early stages easier! What would have helped
me understand and manage my disease and mental health better.

After my diagnosis there were lots of and experience with peers just enhances advocate and to offer more to young
adults and health professionals guiding me; these feelings. people and create a platform for young
this kind of support is necessary and Peer support and participating in research people to share their experiences.
helpful, but maybe what I needed more with other young people is reassuring and A few of my experiences have been
was someone closer to my age who had comforting, it can confirm that perhaps my shared in previous editions of
been in a similar situation and could experiences aren’t so unique or different! LUPUS UK News and Views magazine. I
empathize with me. Someone who knew the Lupus can be isolating and for young want to contribute to the improvement of
journey I was about to start and who could people with JSLE there are still so many services for young people in my local area,
share their experience. unanswered questions. Being a part of the to help increase awareness of the impact
Through years of coping and with a change process and raising awareness is of long term illnesses and the challenges
degree of self-management I’ve learnt that important for me. faced. I also hope to help create a
the greatest expert in my life is me. I’ve had many opportunities to advocate platform for children and young people
Sometimes things go well and sometimes for other young people like me, through with lupus to share their experiences good
they don’t, but the ultimate outcome is patient participation groups and taking and bad in a positive way.
greatly affected and shaped by me. part in patient research projects. Being Kattysterritory.com my website is one way,
Feeling you have a voice that matters is not able to share my experiences to support or and I hope to create other opportunities to
only empowering it can be part of the help someone else is deeply gratifying. I do this.
268C
healing process, and having a shared voice really want to develop my role as an Katrina Brooks
25
luPus uK NEWS & VIEWS SUMMER 2019