When asked to describe themselves people often say they are someone’s mother/father/sister/brother/wife/husband maybe what they do for a living, where they live and so on, but how would you describe yourself? In amongst the words would lupus or pain or exhausted etc be part of the description? Think about the quiz shows where the teams introduce themselves, “My name is John, I’m 51 and a Managing Director from Essex”, not once do they say “and I have lupus”, or any other chronic illness, because it isn’t really part of our identity.
When you live with a chronic illness it’s a huge part of your life and something you can rarely ignore. When you’re in pain most/all of the time it’s hard not to focus on it. So how much is it part of your identity? Lupus can take a lot from you, employment, relationships, finances, independence, sleep, the ability to be as physically active as you once were or even socialise and, if we’re not careful, it can actually steal our identity too. The other issue is that we often base our identity upon how others view us and treat us. If others see us as sick or disabled that can become the way we view ourselves. Of course in reality we are far more than just someone with a chronic illness (or several), we’re still the bright, funny, silly, sassy, kind, cheeky, gentle, strong (and all the rest!) people we always were.
When you first get a diagnosis of any chronic illness it’s overwhelming and it does seem to be the only thing you can think about, it’s totally life-changing and not something you asked for, it was forced upon you and likely unexpected, so of course it became part of your identity.
If you were to speak to your doctor about feeling you are losing your identity they would probably not have a clue what you meant. I came across this very good quote “there is talk of shrunken livers and failed kidneys, transected spinal cords and severed arteries. But in the two decades since starting at medical school, I have never heard the word “identity” spoken there. We talk about loss of blood and loss of lung function but we do not contemplate the loss of person and loss of self.”
There are things that you can do to cope with your loss of identity:
Modification
By this I mean change or replace activities you used to enjoy so that you can still participate in them. The obvious is something like change running to slow walking. If you can no longer take long walks spend time outside in your garden, you’re still getting fresh air and enjoying the outdoors. If you used to play sport could you now teach the sport to children instead? Find things you used to enjoy that you can still participate in now with some modification, the more fun the better. If not, find new things to try out instead.
Review your future plans
Lupus was never in my plans for my future, but once it was I knew I had to look at adjustments. If you are still able to work and are doing a job that’s physically very challenging perhaps you could look at retraining to something less taxing whilst you are still able? By reviewing your future plans to something that fits in with your new life you will still have goals to strive for, maybe not the ones you first planned before lupus, but still they’re goals no matter how small and we all need goals. Everyone has to review their lives now and then, even without a chronic illness, as you never know what’s round the corner.
Assist your body
We’ve all been told a thousand times about not smoking, eating well and keeping active. No-one can make you do these things, but they’re all going to help your body cope with the lupus invasion. After my diagnosis I made my health a total priority and have carried on doing that for over 25 years.
Later when arthritis reared its ugly head too the first thing I did was find a very low impact exercise that I was able to do to help the pain, which it did and surprisingly quickly. It also strengthened my core and leg muscle tone which is vital as we get older. Many elderly people have falls and never recover from them, this was something that I feared so much I was highly motivated into action. There is also no doubt that exercise helps my mood/sleep quality etc.
If you’re unable to participate in exercise speak to your doctor about other therapies that may help and use assistive devices to aid you.
Stop beating yourself up
Don’t strive for others idea of perfection or what social media tells you is the way to live your life. Most of the posts of people living a charmed life on Instagram etc are just a fantasy, we never get to see other side with the dull reality of their lives. Be kind to yourself, if you know you’re doing the best you can that’s good enough. Celebrate the good days, we do tend to go a bit mad when we wake up to a manageable pain level and know that it’s pretty much a done deal that we’ll pay the next day, but so what? It’s often worth the payback!
Don’t lose yourself or your identity to lupus, it’s a horrible illness but don’t let it take anything else from you. You aren’t any less of a person, you’re still the great person you always were with likes and dislikes , hobbies, and opinions , your life is just a bit different now.. You aren’t just your illness you are so much more so don’t forget that.
Who am I?
I’m independent
I’m someone that’s kind to all animals and a wildlife enthusiast
I’m a friend who will be there when I’m needed.
I’m creative
I’m funny
I’m honest
I’m reliable
I’m generous
Hop over to our facebook page and tell us who you are..
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 from a qualified physician. Find out more in our Terms of Use.
