My Journey to Diagnosis

I was diagnosed with lupus (SLE) in October of 2017 after around four years of hospital tests and investigations. Thankfully, I was aware that the tests I was going through were because the rheumatologists suspected I had lupus, and so when I did finally get a formal diagnosis it wasn’t as much of a shock. I know how frustrating it can be when you know something is wrong but nobody can quite put their finger on it.

When I was diagnosed I was one month into my first year at university, studying Primary Education. Throughout my GCSE’s and A-Levels I knew something wasn’t quite right, but without a diagnosis I was unable to apply for additional support with my studies. It feels like only yesterday I was sitting in the uncomfortable exam chairs in great pain with my hips and how frustrating it was to not have any opportunity to get up and stretch when I needed to.

In the UK, the average time for someone to receive a lupus diagnosis is around 6.4 years, so I have no doubt that there are many people who went through the same pre-diagnosis limbo as I did. If I could give you any advice about this stage of testing and investigations it would be to trust your feelings. If you think something is not right, visit your GP. I brushed my symptoms under the carpet for a while with the mindset that it was just puberty. I wondered whether they would tell me it’s all in my head or if people would think I’m using it as an excuse to miss school. They say hindsight is 20/20 and I can see now that I should have kept pushing for a diagnosis.

 

University

Lupus and university are two things that do not necessarily go hand-in-hand. When I began I noticed straight away this sort of invisible pressure to live the “student lifestyle” but with one of my main complaints being bad fatigue, I rarely stay up past 10pm! It is so important to make sure you don’t overdo it. Chances are, your friends and housemates will understand if you decide to pass on nights out.

Of course, everyone with lupus will experience varying symptoms, but with up to 80% of people with lupus suffering from fatigue, it is more important than ever to try and get as much rest as possible.

From my experience, I would highly suggest getting in contact with your university disabilities team for a Study Needs Assessment. This can guide you through any help you may need with a Disabled Students Allowance (DSA) application, if you need one, as well as highlight any reasonable adjustments that your university may need to make in order to provide you with the best care and support.

For me, I was granted as many extensions as I needed which helped to take the pressure off if I had a flare-up while writing an essay. I also received some specialist ergonomic equipment such as an ergonomic desk chair and a daylight lamp to help make sure I am as comfortable as possible while producing university work.

My first and second years at uni have been amazing, but I will admit I have struggled a lot. Whether it’s brain fog affecting my concentration in lectures or during academic writing, or pain and fatigue stopping me from making my 9AM’s. I would however like to say that going to uni despite knowing how much of a struggle it would be is one of the best decisions I have ever made.

Living with my housemates is a daily reminder that no matter how different and lonely I feel, I am not by myself if I don’t want to be. Even when I feel like being alone it makes everything feel better knowing I have people waiting for me with open arms and a shoulder to cry on.

No matter how old you are, 15 or 50, a lupus diagnosis is life-changing and it is always a struggle coming to terms with the fact that your life may never be the same. Being honest and open with friends and loved ones and talking to them about your feelings can really help. Even keeping a diary of your frustrations and feelings can help by getting it off your chest.

In terms of the academic experience at university, I’ve tried to be as transparent as possible with members of course staff as well as placement schools. Explaining what lupus is and how it can affect me helps people to understand that I may need extra time to complete tasks, or have to take more days off than most people.

Overall, going to uni has been a really positive experience and it has taught me that I am more than just “someone with lupus”. I can take on any challenge that comes my way, and learn and enjoy life just like everyone else (I just might be a little slower doing it)!

 

These are my top tips for getting the most out of your uni experience with lupus:

1.       Tell everyone who needs to know about lupus and how it affects you; course leaders, personal tutors, the disabilities team, the placement team (if you have placements on your course), housemates and family members. No matter how far away you move, make sure to keep your family in the loop – for their sake and yours! They can’t help you when you go home if they don’t know what’s going on, and they’re less likely to worry and stress about you if you keep them updated.

2.    Don’t push yourself! Rest as much as you can, it may not seem like it but making sure you are healthy for lectures and during times of essay writing is so important to help you produce the best work possible.

3.      Keep a diary – I keep a diary in the notes on my phone of how I’m feeling and also any symptoms I may experience. This way, when I have my next appointment, I’m able to make sure I discuss everything I’ve been going through to keep my care as tailored to my needs as possible. I will also write down when I’m having a flare up and any medication side-effects I am experiencing, taking care to not forget things amidst the stress of deadlines!

4.      Eat well and take care of yourself. This may sound obvious, but a good diet and exercising when you feel up to it can help you to stay on top of your game. Eating pot noodles and pizza every day instead of a healthy, balanced diet can really take its toll on your body. Different foods are okay in moderation! It will most likely keep your finance in balance too if you plan meals and buy only what you need – save that £30 you would’ve spent on pizza and use it to buy something really useful!

5.       Apply for DSA! Not everyone will be entitled to this, but you won’t know if you don’t apply. Additional funds for things such as printer ink and cartridges can really help if, like me, you find reading on paper much easier than reading on a screen. You may also receive equipment and a Reasonable Adjustment Plan (if necessary) which can really help with your studies.

6.      Don’t let your lupus get out of hand. If you feel as though you are struggling a lot more than you did before uni, the best thing to do is contact the hospital/specialist you are under the care of. Don’t brush your symptoms aside, you may need extra support and you can’t get that without telling your doctor!

7.       Finally, believe in yourself! You can do anything you put your mind to. Don’t let lupus stop you achieving your goals, whether it takes you an extra week, month or year to get things done – you can do it!