Getting lupus in my late 30’s came as a complete shock. I was normally very healthy, nothing more serious than a cold, then I was suddenly told I had a chronic illness.
Whilst the fact I had finally got a diagnosis (after 4 years) was a relief, it was still a complete bolt out of the blue to find out I had lupus, something I’d previously never even heard of.
At the time there was no internet, so all I could do was rely on my rheumatologist to give me information and read library books, which were often out of date. With the best will in the world rheumatologists can give you the medical facts, but unless they have lupus themselves they won’t be able to tell exactly you how you might feel.
I sort of knew that this could be a serious issue, but it was also something that could possibly be managed and I could live with it, but there were some things that I didn’t expect:
There was no cure
To the point of getting lupus I had minor issues where I would go to the doctor and they’d give me medication to fix it and that was that. I now had an illness where there was no cure, the best the doctor could do was try to manage it. Not only that, but no two lupus patients were the same, there wasn’t a ‘one size fits all treatment’, so I’d have to try different medication to find out what would help and that could take some time.
My life would never be the same again
I was only in my 30’s and I was used to doing anything I wanted, when I wanted, I assumed I had many more years of this left, until I got lupus. I had to start to make lifestyle changes, not push myself so hard and accept that I might not be able to do some things that I had previously taken for granted.
I had no idea how lupus could flare up really suddenly. I could be feeling fairly good one day and I’d wake up the next feeling entirely different, as if I’d been hit by a ten ton truck. In the beginning it was extremely difficult to get my head round this and find a way to deal with it. I couldn’t plan anything as I wasn’t sure how I would feel the next hour let alone in 2 weeks time.
The physical toll
Up to the point lupus triggered I’d been very healthy and always active. I now got extreme fatigue and it came on quickly, often with no warning. I tell patients the story of how I was shopping in a supermarket and suddenly abandoned my trolley as I was hit by an overwhelming felling of fatigue and knew that I could either shop or use the tiny bit of energy I had to get back home.
I started to nap all the time which was new for me, I would sometimes get up and within an hour I’d be asleep on the settee. I found this really frustrating as I felt I was ‘wasting’ the day.
I now constantly had aches and pains. I did what I called the ‘Neanderthal walk’ every day from bed, I started off doubled up and by the time I got to the bathroom I would be upright.
I was no longer in control
I’m the sort of person that likes to be in control, I like to know what’s happening and plan accordingly. With lupus I discovered that was impossible, you never know when it will strike and that makes planning anything almost impossible.
I’d feel guilty
When I started to have joint pains (a later symptom) the doctor mentioned arthritis and I immediately read as much as I could about it. My initial reaction was ‘did I do this to myself, could I have looked after myself better/lead a healthier lifestyle?’ That was actually pretty silly as I didn’t smoke/rarely drank/ate healthily and exercised regularly so there wasn’t that much more I could have done, but I still felt guilty that I might have made myself sick.
When I got my diagnosis I started to feel guilty if I had to let people down, whether it was cancelling on a friend, or not being able to work as hard as I normally did. Lupus was forcing me to slow down and it was hard to deal with it as I had previously led my life in top gear. I had to learn to be selfish and say no sometimes, which for someone that was happy to join in with everything was pretty difficult, but with a limited amount of energy I had to learn to carefully prioritise where I used it.
I felt guilty when I looked around and could see that my flat needed cleaning, or I needed to do the ironing etc as I’m someone that likes everything clean and tidy in my home If things are orderly it makes me feel calm, it’s very stressful when you’re surrounded by clutter or can’t find something, so this affected me mentally. Even though I lived alone I still felt I should be cleaning and tidying more, but I was exhausted all the time and it was almost impossible.
People would want to ‘help’
Lupus wasn’t particularly well known when I was diagnosed, so people didn’t know what it was. Despite that, it’s amazing how many different things they will recommend you try as they will apparently help or even cure you. Luckily I’ve always been dubious about anything that isn’t medical advice, so I didn’t try any of the suggestions, no matter how well meaning the advice was. These days it’s even worse with awful people online usually trying to part desperate patients from their cash, offering everything from spells to herbs to ‘cure’ lupus. I’m grateful I wasn’t subjected to them when I got diagnosed.
Things can sometimes change for the better
When I was first diagnosed with lupus I was feeling pretty desperate, wondering how I would put up with the amount of pain I was in for my whole life. For years I was in and out of flares on a regular basis.
However, as I’ve got older my lupus has been less problematic, this unfortunately isn’t guaranteed to happen to everyone as every patient is different and lupus is so unpredictable, but it is a possibility and other patients say this has happened to them too. It’s normally termed as remission and is what we all wish for.
I think what has helped with me is that I’ve learnt to deal with it (over 25 years of experience), learnt to avoid what triggers it and also having gone through the menopause I don’t have pesky hormones flaring up and aggravating my lupus. I show respect for my body and ensure I continue to eat well and exercise regularly - over time I’ve built that up and found a suitable exercise that I can do. Also as I’m getting older I feel I need to do everything I can to keep mobile and as healthy as possible. I do occasionally get flares and there’s usually nothing that I can identify as the cause, but they are far less frequent now.
As I said, I know this doesn’t happen to everyone, but if I’d have known it was even a possibility it would have given me the hope that I desperately needed when I got diagnosed.
Angie Davidson
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