Like the song says “If I could turn back time”.
I was in the peak of health, late 30’s and pretty much never went to the doctors. I’d always looked after myself and rarely got sick, so I took my health for granted, then lupus struck and my life changed forever.
So here’s what I wish I knew before I got lupus.
Health is a privilege. When you are young you assume you’ll always be fit and well, certainly whilst you’re young. It doesn’t seem fair that if, like me, you’ve always looked after things such as diet and exercise you then get hit by a condition such as lupus that you couldn’t avoid. If people are fit and healthy they should take advantage of this and do everything they can physically as this may be the best you will ever feel and you can’t assume you will always have good health.
Don’t put your life on hold. When you have a chronic illness there’s a temptation to put off living your life hoping things will ‘get better’. Don’t put off doing anything you want to as you never know what’s round the corner. If there’s something you desperately want to do, a job you want to apply for or somewhere you want to visit etc, do it now. You should listen to your body but also pay attention to what motivates you and makes you happy and try to continue to do those things, even starting in a small way and building up
Doctors can't always fix you. Infact they can often misdiagnose you, for over 4 years in my case, but often much longer in others with lupus. I was of the generation where doctors were revered and knew everything. I now know that not all doctors deserve the respect they’re given. I no longer trust doctors as I did and will question them, which I would never have done pre lupus. I thought if I got sick, all I had to do was go to the doctor, be examined, maybe get a blood test and then I'd be given something to sort me out. Rheumatologists are the specialists for lupus but they also vary wildly in their knowledge of it and GP’s, in general, know little about lupus, but rarely admit that! Good doctors are few and far between, great doctors are rare diamonds.
I wish I’d have kept my private insurance, which came with a previous job. The NHS is really struggling now and GP appointments are like hens teeth. Sad to say that private insurance speeds all processes up and when you’re chronically ill you need assurance that you’ll be seen quickly.
There is no one size fits all medication for lupus. I expected it to be like conditions such as diabetes, where people were pretty given the same medication to control it. It can take months or longer testing various drugs and different doses of them to find something that works for each lupus patient. In my case antimalarials didn’t work and I didn’t want to take steroids on a regular basis, so I have spent years looking at how I could control my lupus without drugs, it has become a lifetime’s work
Trust your instincts, listen to your body. It took me getting a chronic illness before I made this a strict rule. Females are particularly good at this; I knew I was sick, yet got fobbed off by GP’s for over 4 years. You wouldn’t think this would happen more than once, but a few years later I had another incident where a GP wouldn’t listen to me. This time I dug my heels in and lo and behold I was right yet again, heaven knows what would have happened if I wasn’t so persistent
I’ll be fine one day and not the next. In reality it can change hour to hour so planning anything in advance is an absolute nightmare. Just because you've seen me being active, doesn’t mean that I wasn’t experiencing symptoms at the time, or that I can constantly keep up that level of activity. I try to lead as ‘normal’ a life as I can so ‘cover up’ my lupus a lot of the time, we do become very good actors. Even my closest friends don’t know the truth about what I actually go through as I keep it hidden so well.
You’ll find out who your friends are. Friends will leave and strangers will become friends. Relationships can change: work (boss & colleagues)/partners/friends/family etc, they may break down totally or get stronger. In my case it led to divorce. I hadn’t had a diagnosis when the problems began and yes I probably was a bit difficult to live with, but I was struggling with an chronic undiagnosed illness and all of its awful symptoms and pain. Unfortunately, I had a very unsympathetic partner that didn’t understand or make any allowances at all, so I never felt able to try and explain that I thought something was seriously wrong. Sometimes it’s better in the long run to let unsupportive people leave your life.
Chronic illness can be lonely especially for those that don’t work or work from home. I always appreciate any messages from friends particularly when they suggest meeting up as I don’t have as much social contact as I once did.
Some people won’t believe you’re sick or not understand the severity of lupus. We’ve all heard ‘you don’t look sick/but you look healthy’ etc. People assume that they know whether or not someone is well or healthy based on the way they look, but as we know many people have chronic illnesses with symptoms you can’t see. What’s going on outside doesn’t reflect what’s actually happening inside.
I would never sleep soundly again/napping would become part of my life. I was only in my late 30’s when I was diagnosed with lupus. One of the main issues I had was that I struggled to sleep, was constantly exhausted and wanted to nap all the time. GP’s were telling me it was just my age and never looked into what might be causing it, which was obviously ridiculous as I was still young. Sleep issues are very common with lupus patients we can’t sleep at night, yet can’t stay awake during the day. Worse still is that even if I managed to sleep 10 hours I’d still wake up tired and unrefreshed.
I’d suffer from depression. Despite being the World’s most happy, positive person, I got severe depression for a period of time before diagnosis. I also learnt that it’s not a sign of weakness to ask for help, I was an ex Royal Air Force officer, I believed I was a strong person and thought I should keep a stiff upper lip, don’t complain etc so asking for help was totally alien to me and often it still is.
The internet was coming to help. When I was first diagnosed home computers were in their infancy and there wasn’t the amount of information available as there is now. All I had were very out of date library books which pretty much told me I was going to die! Doctor Google can be your friend, but make sure that you are checking your sources, only go to websites such as ours, where the facts are checked by lupus specialists. There are many scam websites and fad diet books that spread false information to take advantage of people with lupus and usually with the aim of making money out of you. They vary from advice that’s just plain ridiculous to people promising a 'cure’ for lupus, at the least the information is silly, at the worst it’s downright dangerous, so always check information you get with us or your own doctor.
My mother might have had lupus. If only she had been diagnosed I would have also known what lupus was. Looking back in hindsight (a wonderful thing!), she was manifesting what I would say are classic symptoms. She was often depressed, had joint pains and constantly tired - she used to have a nap every afternoon , I was a child and thought that’s what all ‘old people’ did – she was in her forties! Her GP was treating all the symptoms individually and not linking them, mine did exactly the same 30 years later so sadly no change there.
I would end up helping others with lupus. For most of my adult life I’d been involved in some way with charities and fundraising, so one of the first things I did after being diagnosed was raise money for lupus research. With no research there will be no new treatments and definitely no cure. I used to take bundles of cash in the old style cloth bank bags and tip it onto Professor D’Cruz’s desk at my appointments, much to his amusement. Later I worked as a charity manager and eventually Professor D’Cruz approached me to work for the Lupus Trust. I have tried on many occasions to retire but he’ll have none of it so here I am after all these years!
Angie Davidson
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