When I was writing my last blog for Lupus UK, I was terrified. As confident as I may have sounded through carefully constructed sentences, I had never spoken about life with my condition so openly. Living with a disease that most doctors don’t even know much about can be very isolating and make you extremely vulnerable. You often have to find the courage out of nowhere to explain it to someone new for what feels like the thousandth time, so sometimes that courage just can’t be found. Yet, in the spirit of Lupus Awareness month, I thought I should explain why in the hope of getting rid of this shame around my disease.
One reason I don’t like to bring up my conditions to people I meet is that when I’ve done it before, I can see the confusion and judgement subtly ripple across their faces. No one wants to say it out loud, but most people practically do with their facial expressions alone- ‘but you don’t look ill’. They can almost look as if they’ve caught me out in a lie when I’m describing my symptoms, in that if I experienced that much pain daily, how come I’m just standing there smiling, getting on with my day?
Lupus is a disease that has many debilitating symptoms. I suffer from: severe joint pain, muscle aches/ weakness, rashes, fatigue, brain fog, severe Raynaud's and chest pain. These aren’t even all the symptoms that lupus entails, and it’s likely not the extensive list of symptoms that I will face throughout my life. Autoimmune diseases are very complex conditions, with symptoms that vary day to day as well as to the individual to whom they affect. Therefore, sometimes I find that the hardest symptom to deal with is having to talk about my chronic condition, not just in the context of the hospital, but with friends, colleagues and even with blog posts such as this.
Disabilities can often be categorised into two types: visible and invisible. Since I’ve been diagnosed, I’ve discovered the hard way how much our society struggles to accept and acknowledge the invisible ones, such as severe chronic conditions. Often this isn’t just straight-up discrimination or ignorance, but people simply not knowing how to manage it. For example, when someone explains they are ill due to something visible such as an injury, there are standard questions that the recipient can then ask. How did it happen? How bad is it? What do you need to help? How long until it gets better? However, with lupus, all of these come with their own complications.
How it happened is probably the most straightforward to answer, in that it’s a simple ‘no one knows’ response. Autoimmune diseases have no cure yet and researchers still speculate whether they are more down to genetic, environmental or personal health factors. How bad is it and what you need is where it gets trickier. As I stated above, there is so much variety in how a day looks for someone with this condition. For me, there is no pattern in which joints will cause me serious pain on which days and fatigue seems to come on fairly randomly despite what activity I have done. Therefore, asking what I need can be tricky too. Each symptom requires something else, and for some, there’s nothing to be done.
Finally, how long until it gets better is very difficult to get into and for me, this can even be very triggering. ‘Better’ is very subjective in this case. Lupus is a chronic condition, so a lot of the symptoms are things we will all have to just handle daily, and flare-ups are expected to be a part of life that could simply come and go as they please. I’ve had a tough few years of medications failing to stop the escalation of my disease. Even my new medication as I’ve discussed before is only meant to stop the disease from worsening, not cure me of my symptoms. The idea of a ‘better’ me feels so far away, as I don’t think anyone knows what that looks like.
I completely understand that it can be very nerve-wracking to be in the other position, of having someone tell you they have this condition, in that it's difficult to know how to respond. All the above questions are intended well most of the time. Most people often just panic and try to move on, not knowing that the best response is simply to be open and kind. I also like to keep in mind that there was a time when I didn’t know anything about the condition—when I was first diagnosed, I had only vaguely heard the term surrounding news of Selena Gomez’s diagnosis. Since then, it has felt like I have learnt something new every day about lupus and how it affects me, so there is nothing wrong with others being in the same position. While people may not always be up for it, talking about lupus will also help you to understand the condition, that it does not define those of us with it. We may not ‘look’ ill, but everyone has something going on under the surface, so why couldn’t this be it?
Life with a chronic condition is hard, to say the least, and I’ve learned it's so much harder when you live in shame and fear of how people will treat you. Like many with lupus, I have been mistreated by people at work, on dates and by friends. But the times people have been accepting and kind have thankfully outweighed this. I still struggle to talk about my experience, often picturing the silent judgement on people's faces, but I try to remain confident in the fact that our stories deserve to be told. It's only by talking about our experiences and most importantly listening to those experiences, that we can hope to tackle the issues surrounding conditions like lupus. Improving the lives of people who have autoimmune diseases all starts with raising awareness and by reading, you’re already making a step in the right direction, so thank you!
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