So I’ve Been Diagnosed with Lupus…


Story time! This might be a long one, with a bit of whinging so I will understand if you skip this post!

During the winter of my last year at uni, I became concerned when I started developing joint pain and swelling that would come and go in pretty much all my joints. The pain would often wake me up on a night, I couldn’t always bend my limbs when there was inflammation, and when it affected my knees it got to the point walking, standing up and sitting down would leave me in tears. This became worse over the months leading to spring, but naturally I went to the doctors before. My mum has arthritis so they ran some blood tests to see. At first I was told I had low vitamin D levels, (and “slightly anaemic”, which I’ll come back to) so I was told to take supplements and have another blood test in a months time.

The second blood test, when the doctor rang he sounded a lot more concerned and referred me to see a rheumatologist. Which was a little worrying. I made my rheumatologist appointment, but as anyone in the UK will know that’s around 6 weeks waiting time. In the meantime I got a very strange eye infection. Only one eyelid swelled up, there was no weeping or anything, but I went to an out of hours go who prescribed antibiotics. Then it came back in the other eye. This time I saw a doctor during surgery hours, so she could access my data. That’s when she told me my blood tests were showing symptoms of lupus, and she told me to go to A&E to get the eye seen to. I spent a lovely day having a CT scan, X-Rays and countless blood tests. (Shout out to the NHS staff for working such long hours but were always friendly and reassuring.) I also later had to have an MRI scan and saw a neurologist, then an ophthalmologist for the eye. I was prescribed steroid eye drops, and after it came back a couple of times the eye infection was finally sorted out.

By then my rheumatologist appointment had come up. With even more X-rays, blood tests (they once took seven vials and I fainted), and even a bone scan. This still took time, and from when I first saw the GP about my joints in January last year, the results came at the end of August and were inconclusive. The doctor had ruled out lupus, but didn’t know what was wrong with me. Problem was then I was making plans to spend a year in Spain, and with reassurance that I’d be okay I made those plans. They told me Spain would help my vitamin D levels, but I came to Burgos where the weather is similar to England… Oh well…

The joints were still unbelievably painful, so I was prescribed anti-inflammatory tablets which did not work 100%, but certainly eased the inflammation and pain. And off to Spain I went, occasionally experiencing inflamed joints but generally okay.

Until recently, when I fainted during a class. I’ve always had problems with fainting when too hot, dehydrated or if I haven’t eaten. My mum and grandfather have low blood pressure and suffer from the same so I always assumed it was that. But that day the fainting was worse than ever before, and an ambulance was called and I spent another day in A&E having blood tests, X-rays, but they also looked for a blood clot on my lungs, finding none but saw something wrong with my heart. It transpored that I was seriously anaemic (note: not “slightly”)  and had an iron drip administered straight away. Then I had to see a haematologist, who told me to take sick leave until he had found the cause of my anaemia. So lots of hospital visits and blood tests, and he noticed my kidneys were showing signs of infection. This combined with my other symptoms, he said I was showing markers of an autoimmune disease, and a year later I was looking at lupus again, only this time it was certain.

The biggest concern was my kidneys, and I’ve had a biopsy to see what damage has been made. I’m on steroid tablets and autoimmune suppressants to get rid of the kidney infection and to fight the inflammation around my heart. I’ve even had to have two blood transfusions while in hospital because my haemoglobin count became too low, as my bone marrow is affected which is what causes the anaemia and joint pain.

So what exactly is lupus? Lupus, or SLE, is an autoimmune disease, which the way I understand it, is that my body has too many autoantibodies that cannot recognise what is a virus and what are my organs, so it attacks the organs. It’s different for everyone with lupus, but can affect the kidneys, heart, lungs, brain, and skin. Kidney failure and heart failure are common problems that result from lupus if left untreated.

Thats the scary part. Lupus can most certainly be fatal if left untreated. 20 years ago little was understood about the illness, so if you were diagnosed you were basically given a short life span. Thankfully these days doctors understand it more, and although there’s no cure, it can be controlled and managed and most sufferers can expect long lives. So fingers crossed!

And how does one get lupus? Nobody really knows. They think genetics play a small part, but that it’s mostly environmental. It turns out my blood type (B-), is susceptible to autoimmune illnesses such as lupus, but hormonal changes, particularly in girls, stress, infection plus other things can trigger it. It’s treated mostly with steroids, autoimmune suppressants and even chemo, and regular check ups throughout the persons life.

It’s going to be life changing, that’s for sure. It makes fatigue worse, I’ll be so often on medication, and sometimes general day to day life will be difficult. The joints still slow me down on painful days, to the point sometimes using stairs is awful. I’m now actually afraid of my own body, and every twinge will make me panic. I’ve been ordered off the pill, I might have to return to the UK early, and the doctors have even suggested postponing starting a masters in September. I don’t want to! I’ve had offers from all four places I’ve applied (Leeds Uni, York Uni, Queen Mary and IBEI in Barcelona). My heart is set on Barcelona but my dad is advising me that Leeds or York will be more ideal as I will be less than an hour away from home, and family. But I’m determined to not let this affect my life choices. The worst thing I can do I think is restrict myself and create regrets. It’s unfair to have lupus, so I want to make sure I still make the most of this one life we get (little cheesy). Chronic illnesses can affect your mental health, so that’s something I want to take care to not let it get me down too much. Plus I have more faith in the Spanish healthcare system these days… It took them 3 weeks to diagnose what the NHS couldn’t in 7 months!

Another thing that bothers me is, as it’s a chronic illness, it means the person suffers for long period of time, basically for life. Luckily normal life can be managed, and people might not even notice you’re ill unless you tell them. It’s known as an “invisible illness” for these reasons. Sadly that can mean people’s understanding may be limited. I’ve clearly had lupus for a while, and looking back the symptoms are more obvious. But some people just seem to think it’s not that bad, or “you don’t look ill” (cue that Incredible Hulk/Avengers meme: “that’s my secret…I’m always ill”). It’s been hard to explain to people that sometimes my joints hurt so bad I can’t stretch my legs out in bed. Luckily now I have a name to the illness, but even so during normal days if I need a little help or understanding it might not always be there… Generally I’ve been amazed by the support I’ve had, particularly in Spain. Friends here and back in the UK have been so good to me, I’ve never felt so lucky to know such good people. Family have flown out to see me, others are constantly asking for updates. Even work have been great at understanding, thank god! But sometimes people seem to not understand what pain I’m in, and I’ve come to realise the hard way it’s a factor that will affect relationships. Good thing is I can quickly suss out any guy who won’t be there for me, because I will clearly need a lot of support from time to time. Which I need to get from myself, and those I can fully trust. The medication is going to have unpleasant side effects: weight gain, moon face and more prone to infections. It’s not going to be pretty! But living is more important than prettiness, I have enough kindness and wit to win people over I think 😉 (Jokes I’m just going to get 10 dogs and a cardboard cutout of Johnny Depp…)

So I think I’m going to conclude now. This is mainly to get out what’s been on my chest and at the back of my mind for so long, and it feels good that I can finally focus on what it is that’s wrong with me and not what might be wrong with me. If anyone’s wondering why I chose a photo of me with Mr Bean, it’s because of this: That was taken two days before my biopsy, I was in Madrid with my sister and Dad. Taking it easy, but still able to enjoy myself. And, although it’s really a look of fear of the Spanish speaking Mr Bean, I like to think I look generally happy. Because although this diagnosis is getting me down, I still am happy. I’m surrounded by good people, in an amazing country and I have an exciting future to look forward to. And although during the time of the picture my kidney was hurting, and I was scared and troubled, it shows that life can still be enjoyed to the fullest. Mr Bean wouldn’t have realised I was ill, so being diagnosed with lupus is not the end of the world. Times will be hard, but times will be hard for everyone for various reasons. I’ve got some crazy adjustments to face, but I like to think I’m quite an adaptable person, so…*warrior cry*

10 thoughts on “So I’ve Been Diagnosed with Lupus…

  1. I too recently was diagnosed with lupus after YEARS of mixed symptoms, tests and very few answers. It’s slightly relieving to have an answer, but it’s a very tricky disease and is different for everyone. A lot of trial and error. i wish you well and hope that your treatment plan is able to leave you able bodied and pain free for the most part. Take care! xoxo

    1. Thank you! It does seem so many people face misdiagnosies or none at all for too long! I’m glad you got your answers too, and hopefully your able to have a normal, fun life! Xx

  2. Sorry to hear of your illness, I can “hear” that you have a good spirit.. Stay positive.. which is hard on the bad days. There is a quote by Kurt Vonnegut that I love and try to keep close by.
    “Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place.”
    I wish you the best.. and that includes getting your Masters.

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