My Lupus Story

October is Lupus Awareness Month in the UK. I have decided to write the following. I hope that you can take the time to read this.

This is my lupus story.

When I was 24, I was diagnosed with Systemic Lupus Erythematosus (SLE). The charity Lupus UK describes lupus as “an incurable immune system illness, probably genetic in origin and mainly suffered by females. It can affect any part of the body and that’s the danger”.

Being told that I had an incurable disease came as a shock but after months of feeling unwell and not being able to function properly, I could have kissed the doctors at Guys Hospital when they gave me the diagnosis. For months leading up to the diagnosis I had been visiting my GP on an almost weekly basis with various health problems. At one point, it was suggested (by the GP) that this was all in my head and he wrote me a prescription for Prozac. So to finally be told that I wasn’t imagining it came as such a huge relief. Then the journey of recovery started. Although there is no known cure for lupus, it can be managed with a combination of drugs. My lupus had been undiagnosed for so long that my kidneys were shutting down and I was rushed into hospital with Stage 4 renal failure. I was thin and unwell, having spent weeks and months progressively getting worse. On a good day, I could get up and get dressed but bed could not come soon enough. Once in bed, my fever would be so high and yet my body was shaking with cold. However, according to my GP, it was all in my head!

Once in hospital, things started moving quickly. I had a kidney biopsy and was told that, due to the speedy rate at which my kidneys were failing, treatment would be “aggressive”. They weren’t lying. I started having chemotherapy and intravenous steroids. The sickness was immense. The night sweats and dreams made for interesting bedtimes on the ward. My doctors were using words like “dialysis” and “kidneys are failing at such a fast rate”. It was just a waiting game to see how my body responded to the treatment.

Having lupus means that my immune system is hyperactive. The antibodies, which are created to protect me, actually start attacking me. In my case, they loved my kidneys.
This is why the doctors used “aggressive” treatment such as chemotherapy. Chemo attacks everything and therefore it suppressed my immune system.

So, amazingly, my kidneys liked all this aggressive treatment and as my consultant said, my kidneys were “responding beautifully”. 3 or 4 weeks later (I can’t remember), I was allowed out of hospital. I was sent packing with a whole lotta drugs. I moved back in with my parents, just in time for Christmas. Christmas Day came and things weren’t good. An emergency doctor was sent out to see me and meds had to be altered. That’s the thing with lupus – what works for one sufferer might not work for another. It’s known as “the disease with a thousand faces”. Lupus mimics other illnesses and can be incredibly hard to diagnose. Over the coming months there were many more hospital visits, admissions, bloods taken, etc. I had 4 months off work in total. I was incredibly lucky to have had such a supportive employer.

So, that was 17 years ago. 17 years on, I still have lupus. In that time, I’ve also had a successful career, I’ve had an amazing social life, I’ve travelled, I’ve met and married an amazing man and I’ve had 2 children. I count myself very lucky that I can say I’ve done all that. Before having children, I took it all for granted. I didn’t have any of the joint pains or much of the fatigue that they always speak about when lupus is mentioned. I worked, travelled, drank ridiculous amounts of wine, smoked like a chimney and danced like it was going outta fashion. Life was good.

Life is good now but it’s very different. Pregnancy and childbirth has done something to me. I am much more aware of my lupus since having had children. I was advised in my late 20s to have pre-pregnancy counselling. Lupus causes many issues in pregnancy and my consultant advised me to know all the facts before deciding. After seeing 3 doctors, I decided not to have children – oh how things change!

Shortly after getting married in 2008, we fell pregnant. We were shocked but ecstatic. My future was all planned. I lost that pregnancy in the early part of 2009 (miscarriage is very common with lupus patients). To say I was devastated would be an understatement. It’s something that no woman should have to go through. I then fell pregnant with Charlie Boy. As predicted by the docs, it wasn’t an easy pregnancy. I was told that I’d be lucky to make it to 30 weeks. I made it to 38 – go me! Pre-eclampsia had set in and I was induced. On the 20th December at 07:31, Charlie was born by emergency C-section. Throughout both (successful) high-risk pregnancies, I was looked after by an amazing team of doctors and midwives at St Thomas’.

These days, I’m knackered most of the time. My joints ache and most of the time, I’m happiest under a blanket on the sofa (because when you have lupus you reallllly feel the cold!). I no longer smoke and I rarely have a drink. Alcohol makes my joints ache for days and tires me out. It’s been hard going from having had such an active social life when I worked in the City to suddenly not having one (or having a more sedate one). It’s been a cause of anxiety. I do not want to be judged as “boring” or “lame” because I don’t drink. Not that I ever have by anyone, these are just the negative thoughts that come with feeling anxious and fragile. The idea that you will somehow be forgotten if you don’t indulge. Most days are achy days. Some better than others. On bad days, it’s a sofa day with the dog. On a good day, I feel like a good wife and mum (just call me Betty Draper – without the blond locks and slim frame), when I’m able to do chores, walk the dog, cook a proper meal. These are winning days. At the moment, life feels a little tougher. My bones hurt and I have a huge desire to sleep. I took my son to do a graffiti class yesterday – I had to sleep for 3 hours when I got home as being out had used up all my energy. It terrifies me when I think my lupus is grumbling as this can lead to a flare. Common colds and infections that most people get are a potential trigger. If there’s any suspicion of an infection, I need to see a doctor and be prescribed antibiotics (just in case).

So, that’s my lupus story. I have lived with this for 17 years and will most likely be on medication for the rest of my life. My meds consist of immuno suppression (yep, I’m susceptible to any nasty bugs doing the rounds and it takes me much longer to recover) and anti-malarial (yes, really). These meds cause other issues too – increased risk of certain cancers, etc.

Lupus is an illness that affects mostly women. More people need to be aware of this silent and invisible illness. I may look well on the outside but the reality is very different. I have had to adjust my life to accommodate it. If I don’t call you or I cancel plans, it’s always with a heavy heart. Some days are just very hard. Some days there are physical issues and some days it’s psychological. Having lupus has caused me a huge amount of anxiety. I am not able to commit to working or to social events, as some days are a no-no for me. I feel like a failure at times. I try not to moan or go on about having it and I try not to let it define me. A friend recently commented that she forgets I have it as I rarely mention it. I like that. I like that I’m not seen as that person with lupus. But there are days that I need people to remember that I have it. So if you see me posting about “Wolfie knocking at the door”, it’s to let you know that things are grumbling (lupus is Latin for “wolf bite”, hence the term “wolfie”).

I have amazing support from hubby. He is my absolute rock. Friends and family too – you know who you are.

Thank you for taking the time to read this.

Wolf girl x

More information about Lupus here:

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Claire Room is a 41 year old married mum of 2. She lives in Bromley with her husband, Dave, her children and their dog. Claire worked with investment Banking in the city for 13 years prior to having children. She was diagnosed with Lupus Nephritis in 2000.