Few people really understand what it’s like to have Lupus, or even have a clear idea of what it is. As the many symptoms Lupus creates can vary so wildly within and between patients, even medical professionals can be under-informed or fail to recognise the problem – sometimes making getting a clear diagnosis a drawn-out process. In order to raise awareness of Lupus and the impact it has on people’s lives, this October is Lupus Awareness Month, where campaigners aim to make the illness part of our national conversation.
What is Lupus?
Lupus sounds like an odd name for an illness, but it is derived from the Latin name for a wolf. One theory states that the name comes from a historic belief that Lupus was caused by being bitten by a werewolf, but generally it’s assumed that it was given this name because the facial rash that used to appear with Lupus (but with treatment rarely does now) resembles a wolf’s bite.
Lupus appears to be a genetic problem, and it’s a chronic autoimmune disease in which the body\’s immune system becomes hyperactive and attacks normal, healthy tissue. Because Lupus is principally triggered by hormone changes, such as those experienced in the onset of menstruation and childbirth, 90% of sufferers are female.
As well as being hard to define, difficult to diagnose and featuring a huge amount of variation, Lupus is a mostly invisible illness. The people who live with Lupus usually don’t appear obviously ill, and because flare-ups of symptoms happen suddenly they may find that they function perfectly well one day and are completely incapacitated the next. At times, this can make the illness and those who have it very misunderstood, with people assuming that, as they don’t look ill, they must be exaggerating.
This is especially true when you take into account that one of the most life-changing aspects of Lupus is fatigue, where no amount of sleep can stave off a feeling of complete exhaustion. This is only really obvious to the person experiencing it, and other people can be quick to assume that if they simply put the effort in and perked up they would be fine. Even friends and family can misjudge this, getting annoyed over cancelled plans or being insensitive to the issue.
A Personal View
Hayley, who lives with Lupus, was kind enough to share her experiences to give people an insight
I was diagnosed in 2009 with Systemic Lupus. When you get told you have a chronic illness, it’s a shock to the system. I had minor symptoms to start with, and over the years with added illness that are caused by the Lupus things got worse and worse. I have emphysema, Raynaud\’s phenomenon, and avascular necrosis all caused by the Lupus.
On good days, I get through as best as I can. My joints are unpredictable and the pain onset is fast. I have to be careful in everything I do. On bad days I will be exhausted, the pain is horrendous. Usually in my feet, but I get the pain in my hands, elbows, knees and wrists, and I can’t walk unaided. And I had to move home with my parents to get support and help from them. On bad days I might not be able to put weight on my legs or use a knife and fork if my hands are playing up.
My memory is also terrible, I’m on so much medication that im away with the fairies a lot of the time. The worst thing above all else is the fatigue. I wake up after a good 8 or 9 hours sleep and feel exhausted. My weekends are usually spent in my pjs, sleeping and resting. I used to have many friends, but because I can’t go out drinking, or go to theme parks or other things people my age do, I got left behind.
My mum suffers with Lupus as well, and growing up with her suffering I saw a lot and sort of understood what to expect. I know keeping positive and not letting it get the better of me gets me through each day.
I still work full time, although as my illness has progressed, it’s been harder to be at work. Going to work gives me a sense of purpose.
I\’m very lucky to have many supportive people in my life. I have close family and friends who always offer help and support on days I’m really struggling. I haven’t been shy about my condition and my work collegues are all aware of my issues. They understand and help me through some of the bad days. My specialist knows me by name now, and I see her regularly. She’s been with me since I was diagnosed, and anything I don’t understand she will explain.
Unless my Raynauds is playing up or my body is swelling and I have a limp, to look at I don’t look ill. Lupus isn’t a well known condition, and if more people were aware of it they would change their minds. It’s a daily uphill struggle for anyone who suffers and no two lupus sufferers will have the exact same symptoms.
Stress and Autoimmune Disorders
For many people who live with Lupus or other autoimmune disorders, a key trigger to flare-ups is stress. As a society, there’s things we could do to make lives easier, like ensuring that employers are fully equipped to support employees when they encounter these problems, and making sure there’s financial provision when people simply cannot work.
But on a personal level, we can also offer support with meditation. When combined with doctors advice, medication and self-care, meditation reduces the stress which causes flare-ups and also helps people deal with pain. If you’d like to know more, you can call us on 0207 127 5008 or email at email@example.com.