This blog is about how to get by living with lupus in the real world: that is when you step outside the consultant or doctor’s room and actually have to get on with the rest of your life.
It is intended to discuss the kind of information I would have like to have been handed alongside the medical literature I was given on that bemusing day I was first diagnosed with having a disease that I had never even heard of and couldn’t even say. ‘Systemic Lupus Erythematosus’ hardly trips off the tongue, and it certainly doesn’t sound very friendly! On that day, little did I realise how big an impact on my life as a whole it would have.
Whilst healthcare professionals usually provide medical and some superficial practical lifestyle information, the patient is often not prepared for the wider psychological, emotional, lifestyle and practical implications of ‘sharing their lives’ with lupus, which they are necessarily bound to do, like it or not. ‘Lupus Now’, the magazine produced by Lupus Foundation of America can be very helpful but much literature often only scratches the surface of ‘lupus lifestyle’ without really getting into the real ‘nitty-gritty’ or helping with specifics. There is also a lack of information, help or suggestions on how to mentally and emotionally tackle lupus, something that can be challenging. For me, the richest source of help on this front comes from other patients but even this can often be buried beneath layers of negativity or scary stories that can be off-putting. There is clearly still space for a positive source to pool suggestions for this kind of thing based on real life experience.
I am approaching this subject from a number of perspectives.
Firstly, as a lupus patient: I was formally diagnosed in 2002, but as is often the case with those diagnosed with lupus, realised with hindsight that I had lived with the condition for much longer than that. The impact lupus has had on me has varied over the years. I have had some years of ‘niggley’ lupus where symptoms are irritating but by no means unmanageable, to ‘devastating’ lupus that has been life-threatening resulting in Intensive Care and heavy-duty treatment. So the fact is it has become a significant albeit decidedly unwelcome, part of my life which I have had to try to get some kind of handle on.
Secondly, I approach this as a ‘modern’ woman: I consider myself fairly regular girl from London, living my life with all the concerns, interests, pressures and preoccupations typical of women today. Unlike some of the information prepared by doctors and organisations, I address the subject of ‘living with lupus’ from a perspective personal to the lives and concerns of real women.
Thirdly, as a qualitative researcher: because this is what I do for a living (when I am well enough). When I started the process of writing this I found it nigh-on impossible to remove my researcher ‘hat’, so decided to embrace it. Since leaving university (10 years ago now – yikes!) my career as a market and social researcher has revolved around me ‘prying into the lives of others’, mainly by listening intently to people but also using other techniques. It is also convenient that my specialism has been health related and personal subjects. Over the years, I have researched topics as diverse as living with obesity, sexual health, personal hygiene and vaginal thrush – oh, the glamour! Still, this has provided me with a solid foundation (and a rich bank of other highly qualified research professionals) for exploring with other women how they manage life with lupus and to help illicit from them strategies and tips that could benefit others. Who is better to help and advise on the subject than someone who has been living it and doing it themselves?
The research project I undertook with my respected colleague and treasured friend Elena in 2007/8 gave us more than we were bargaining for. Not only did we unveil some really poignant insights, we made a connection with some very inspiring individuals who are now supporting us on our mission to help people with lupus find the most positive way to approach their lives and to help us raise awareness; which is something in itself that would significantly improve the lives of those with lupus.
It is vital to make clear that all this does not pretend to suggest that a single straightforward ‘solution’ to how to live your life, with (or without) lupus! Of course, everyone is different and entirely individual with different perspectives, lifestyles and backgrounds. Lupus is equally individual and has symptoms that are so bafflingly diverse that two patients rarely experience exactly the same thing. In light of all this individuality, everyone’s approach to living with it will be individual. What works for one, will not necessarily work for another. There is currently no cure to lupus or one medical ‘fix’, and similarly there is no one approach to managing life with it. Sadly, I am afraid there is no ‘solution’ as such. However, just as the medical professionals must endeavour to tailor the optimum concoction of drugs to help best treat each patient, it is for each individual with the disease to find for themselves how best to live with it. My research has shown me just how amazing and inspiring patients can be at doing this. Also, anyone who lives with lupus knows that it is not always easy and in some instances it is painfully difficult and far from straight-forward. To say otherwise and pretend that there is always an easy, simple way to get through it, would be to trivialise something that is truly challenging.
Instead, the aim of this blog is to try and explore ways to help ‘smooth the way’. By sharing my own experiences and the lessons I have learnt, as well as those we have learnt from our research with other lupus sufferers, I hope to help identify options and possibilities that can be tailored to fit your own lupus and your own life. They say ‘a problem shared, is a problem halved’. I am hoping that at least for certain things this might work in reverse, and that ‘a solution shared’ could be ‘a problem halved’.
Each monthly entry posted will be designed to explore a particular issue or topic or offer some tips and advice but there is bound to be far more that could be said and we hope you will add comments, advice and help wherever you can.
Our first topic will be ‘Getting your head around lupus’ ... seems an appropriate place to start!