World Lupus Day

May 10, 2021

3 min read

Hello fellow warriors!

May 10th.

World Lupus Day.

How can such a horrible thing get a whole day dedicated to it?

Well, World Lupus Day is the day where those who fight the ongoing, uncertain battle with Lupus can get the recognition for the strength they have to power on. Me being included.

Yes, having lupus sucks and yes, we feel ill most of the time but today we can come together and celebrate how far each other has come. For me, I can also celebrate how having Lupus inspired me to create something for the community which in years to come will help those who suffer doing the simplest of things such as wearing make up.

Having a disease that is completely invisible to any passer by can be difficult at times. During diagnosis, people think that you are making up your symptoms. After diagnosis, people think that your making it out to be worse than it is. For example, a lupus headache is not just 'a little headache' and 'a paracetamol or two' will not even touch the sides. Sometimes it seems as though we are fighting with our friends and family as well as ourselves just to prove that we do not feel well, or we are having a flare up. (This is also another reason why I started this blog, to educate those we live with, so with that being said, Hello fellow warriors families!).

I have recently been thinking about what I would tell myself if I could go back to when I was being diagnosed (which to be honest is an ongoing thing) so I thought that I would share just incase any of you wonderful lot could do with hearing them too!

Firstly, yes your hair is coming out, your mum is right!

From the age of 14 to 17 I was in complete denial that my hair was falling out. Being a dancer, my Mum did my hair a lot and kept complaining how my hair had completely changed but with my hair being my favourite feature (I was known as the girl with the perfect hair) I refused to believe it and told her she was imagining it. Cut a long story short, that was the first symptom of Lupus that I showed and I now have a quarter of the hair I used to have but we can roll with that!

Secondly, it's ok not to feel ok!

I was a very sick child. I was off school every month for about a week with some kind of throat or ear infection or just a mean cold that I couldn't seem to fight off. One time that really sticks in my head is a chest infection that I had when I was 13. I never wanted to stress my parents out as I knew how worried they got when I just wouldn't get better so I always said that I felt better when in fact I felt 10 times worse. Obviously, I wasn't fooling anyone and my chesty cough was a dead give away but had I of listened to my body in the first place and just stopped for a week things may not have got so bad and I wouldn't have missed a whole month of school and a dance show. Basically what I am trying to say is if you need to spend a few days in bed to feel better then do it!

And lastly, believe in yourself!

Now I don't mean this in the typical 'I can do anything' way. I mean believe your symptoms and know that something is not right and keep fighting until you find out the real, true problem. My symptoms were a bit all over the place. No rash, but hairloss. Clear blood tests but low complement levels and positive antibodies. I was told I had so many other things and that I couldn't possibly have Lupus for about three years. I nearly started thyroid medication which would have been unnecessary but would have lead me to being on those tablets for life. So, don't let a doctor who isn't sure make you feel as though there isn't anything wrong just because he can't figure it out. Find another doctor!

Sorry for rambling on but there is such a lack of support during the first stages of a diagnosis but I want people to know that there are people out there who understand what they are going through even though you can't see what's happening on the inside.