I’ve had lupus for about 30 years and this is a selection of what I personally wish people knew.
It’s incurable and chronic. Just because you see us out and about doesn’t mean we’re ‘better’ or ‘cured’. We have some days that the pain level is tolerable and some days where it isn’t, so we take have to take full advantage of the days we can function at all.
It waxes and wanes. We can be ok one day but not the next day or even the next hour, this makes planning anything almost impossible, when we wake up every day we have no idea how we will feel. We may have to cancel plans last minute so try to find a way to forgive us when we do this, we’re definitely as disappointed as you are. Also, please keep inviting us to things as otherwise we will feel even more isolated from the human race. When lupus doesn’t flare for a long time we call that remission, again that doesn’t mean to say we’re cured as the smallest thing can flare lupus again.
Medication doesn’t ‘fix’ lupus. There are thankfully more treatments for lupus now than there were 40 years ago when lupus was pretty much a death sentence. But unlike with other conditions where you take a medication and you’re better, this doesn’t happen with lupus. The medication is used to try and keep lupus symptoms under control or possibly lessen the severity of them. Also lupus changes, our medication has to be continually reviewed and swapped to something else or the dose altered, so we’re in a continue battle with lupus. The other issue with medication is that it all comes with the possibility of side effects which can be almost as bad as the disease.
Sometimes we isolate ourselves. We’re coping with a chronic painful illness, this is absolutely exhausting both physically and also mentally, this may mean we just want to be left alone for a while. Again please understand this is nothing personal we’re just recharging our batteries so that we can carry on. If you’re worried send a little text just to let us know you’re thinking of us.
It affects our memory. Lupus can attack any organ including the brain. The result can be serious and the majority experience what we refer to as ‘lupus brain fog’, which is less serious but extremely frustrating for us. It’s like the feeling of going into a room and having no idea why we went in there. Our thoughts can be jumbled and we can struggle for the appropriate word, people should be patient whilst we try to express ourselves. I often speak quickly to get the words out whilst they’re in my head or interrupt to say something before I forget it forever. People criticise this and someone said ‘don’t you speak quickly’, which I found rude and a bit embarrassing, I doubt that person would have said anything if I spoke slowly.
We don’t look sick. What’s going on on the inside isn’t reflected on the outside. People often say how well we’re looking and assume we’re ‘better’, but as I said previously we are currently never going to ‘get better’, it’s likely that someone may look very well but is battling severe pain. The worst thing about looking so well is that people can think that you’re making up the fact you have lupus and not believe us, seriously if I was going to make up a condition I would choose one that people would understand and believe. Whatever we look like we’re not cured.
You just need a good nights sleep. Getting more sleep may well help other people but we can’t sleep at night, insomnia is very common with lupus patients. It’s ironic that we’re always exhausted but lupus steals our ability to sleep.
We have to give up a lot of our ‘old life’. When you get diagnosed with lupus it may mean looking at a lot of lifestyle changes, that can vary from person to person dependant upon how disabling their lupus is. Some people are able to carry on working, some people are not so it is a very individual matter.
It’s hard to explain how you feel to someone that doesn’t have lupus. ‘If you don’t have it you don’t get it’, we can try to explain it to you but it’s hard to do that as lupus is so complex. Some things are more difficult to explain than others, especially things like the continual chronic exhaustion, you may think you know what it’s like to be exhausted but unless you have lupus you probably have no idea just how bad it can be.
Lupus affects mainly women but it does affect men and children. People hear the word lupus and immediately think it’s a ‘woman's illness’, that’s because 90% of lupus patients are women. Men (and children) can also get lupus and in the case of men it can be more complex and more severe.
There’s no cure for lupus. Most people that have lupus have spent years researching it and looking at things that may help it, you can be sure if there is anything that can help at all we will have tried it and for sure we’d be recommending it on this website. Please don’t suggest a ‘cure’ that you read about, heard about from a friend etc, there is currently no cure and if there was we would definitely know about it.
If you’d like to learn more about the things listed above I’ve included links (in red) to the relevant pages on our website.
Angie Davidson
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.
