Life Lessons I Have Learned When Living With Lupus
I was diagnosed with Systematic Lupus Erythematosus (S.L.E or Lupus for short) in 2014, when I was just 14 years old. It is an ‘invisible’ illness, meaning if you were to look at me you would probably think there was nothing wrong with me. But, unfortunately I feel nothing like I look.
Lupus is an incurable auto-immune disease that affects my body internally like my joint pain, psychologically such as my lack of concentration and externally on my skin. Because of this, I have had to ‘shield’ and not leave my house for twelve weeks for my own safety during the Covid-19 outbreak.
With Lupus, every day is really a new day. Every individual fights their own battle and it is the same for every Lupus patient. Every one of us has our own way of being diagnosed, our own treatments and medications, our own stories of our journey of how we have gotten better and worse and better again. Now at 20 years old, I have learned a thing or two about living with a condition like this. It was hard enough trying to go through school not being able to enjoy what my friends can enjoy. After all, doing things that healthy people can do made me forget I actually was not one of those people. It meant I could not go with them to the beach because I am sun-sensitive, I could not go on long walks or take part in P.E. because I struggle with joint and muscle pain, or that I may cancel plans because I am ‘too tired’.
But whatever happens, there is nothing more important than the number one rule which is that health comes first. It does not matter how much I want to do something if my health does not allow it. I learned that the hard way as the last time I overworked myself without even realising, I got shingles. Something that is normally experienced by the elderly with weak immune systems, I got to experience twice before I even turned 18.
Thankfully, I have understanding friends who are the best, but however supportive and considerate they are, they do not really know what I am going through. When I am with them, it means I feel up for seeing them, I have enough energy to see them and can enjoy and appreciate their presence. They do not see me when I am at home recharging. Because let’s face it, I would never want them to see me at my worst state. They do not see when I struggle to get out of bed because my body is so sore that my mum needs to help me get up and aid me down the stairs. They do not know how bad my sleeping problems are; that it is normal for me to wake up multiple times during the night before I eventually give up, sneak downstairs and watch TV at 3am because I know there is no hope for me to sleep at all that night. They do not see when I wake up from a horrid nightmare or the hallucinations I wish I could not see, but I do. They do not know that I often have bad days where I do not want to be near anyone because I know I will dampen everyone’s mood, but I never let anyone know. They do not hear me cry myself to sleep because I think ‘what have I done to deserve this?’ or ‘why can’t I get better?’.
This brings me to the next thing that I have learned. To always, and I mean always look after your mind. Our brains are our own safe-house. It is a sacred place where all your thoughts go and you are the only one that has the key unless you allow someone to access it. And you should, because that is a crucial part of staying well so you must take care of it. I have learned throughout all of this that you are never alone. I would not have been able to stay positive, keep believing that I will get any better if it weren’t for my friends and family. That my friends are patient when I am walking slowly because I am unable to keep up, consider postponing a Facetime because I did not sleep a wink the night before or changing where we are meeting because they know I can not be in the sun for long. If my family did not tolerate my mood swings, help me collect my medication when I am unable to get it myself or just being there to talk to when I am feeling down. It is because of everyone around me that has made things easier. It makes it easier to stop blaming myself. Because you should never blame yourself for having Lupus. Ever. So keep your friends and family close, because the best ones will stick with you no matter what and with them around you are never going to feel lonely.
Unfortunately, with Lupus I can never expect that I will wake up the next morning and feel good. I have had some pretty rough days and expecting too much just allows Lupus to put me back in my place. 2019 was a pretty solid year for me. I had no problems with my health whatsoever and even managed to decrease some of my main medications. But however well you think you are doing, Lupus comes whenever it wants to. And it did. As soon as 2020 started, everything started going downhill and all it needed to start was one little spot. One spot to show that I am working too hard, not resting enough or that my friend called Lupus just wants to come and visit. It does not really matter what the reason is, but soon the spot grows, it starts to hurt a little, itch a little and soon it is all over your body. If not controlled, it can be very problematic, or at minimal, it can really hurt. Like it does for me now, just typing this article. Do not get me wrong, I am not saying to not have any expectations, but it means I must remember to take into account the long hours to read things, the extra concentration when writing an essay, the days I might have to take off because of ache or fatigue. My dad always says a small Chinese encouragement that translates to ‘add oil’, as our bodies are machines that need to refuel and recharge, but unlike machines, we’ll grow. So whilst you must keep going and learn to progress, the most important thing to do is not worry too much about the end result, but to know that you have tried your best and as my dad always says to pace yourself.
So make things easier for yourself. As well as having supportive people around you, it is also important to keep yourself busy — because the less you do, the more you are going to miss. I was lucky that I had a pretty active childhood where I tried out all sorts of activities because my parents felt it was important to find hobbies that I liked. So I learned to ice-skate, horse-ride and swim. I tried Brownies, took part in a crafts club and chess club. I played piano, tennis, table tennis and badminton. I learned to keep myself entertained when I was not well enough to go to school for three months by drawing because I missed my art class, colouring and writing because it was therapeutic and learned to cross-stitch and sew. Having things I liked to do meant it was harder to get bored and would forget about any negativity that was around me. If I had to choose, table tennis was always my favourite. I always felt better when I played because I felt it was my own thing, where no-one in my school or now university circle was part of and so could meet new people I wouldn’t have met otherwise. It gave me something to look forward to when I had a match to play every week or when I had training and could relieve any stress I had by playing and bouncing it off other people. It let me take care of my body through regular exercise, which is critical with Lupus.
After being diagnosed and finally going back to school three months later, it was extremely difficult. I was not familiar in having problems concentrating on my schoolwork or falling asleep on my desk at home. I realised I had to start lowering my standards and create realistic goals. As much as people say to ‘not let Lupus define me’, it is a part of who I am whether I like it or not. Lupus has been a guiding factor in my important life decisions. Apart from the University of Aberdeen being the only university I liked that offered the degree I wanted to do, it was also the right choice because it was where my family lives. It meant if something happened during my education that I would have people to fall back on, even when living in student halls and for me, the right choice was the smart choice. Just after three months of living there, my Lupus came back with a flare-up, making it difficult for me to engage in university, ultimately taking a toll on my health. If I had decided to enrol in any other university, I know that I would have had to drop out and move back home. By making this choice, I not only moved back home but could continue with my studies. So there is no point in me trying to outsmart Lupus, because however well I think I am doing, it will come back. Instead, I should just embrace what I have. I must accept that I am not the same as everyone else my age; that I can not read or understand things as quickly, I can not go to the same holiday destinations and I am definitely not well enough to live on my own. Yet. But that does not mean I never will.
So I guess those are the lessons that I have learned and will hopefully continue to keep in mind as I grow. That health, always comes first; to look after my mind; to keep my friends and family close; to always try my best and pace myself; keep myself busy; to set realistic goals; but finally, do not ever think there will not be a cure.
