I’ve been wanting to write about this for a while and today I’m finally getting round to it. In short, What happens when you’re technically not in a flare but you still feel unwell? How does this grey area affect your quality of life?
People with chronic illness should find this all too familiar and people without may find it answers a few questions about their loved one.
Medical literature tells us that Lupus is either active or in remission. I personally hate this explanation because it’s not that simple. It’s also dangerous to use the term ‘remission’, especially to a newly diagnosed patient because it implies that Lupus goes away. However, when a blood test shows that everything is ‘normal’, why are we more often than not still feeling awful, still feeling pain and still fatigued?
It’s nearing the 11 year anniversary of my diagnosis and hand on heart, I think I can count on one hand the number of days I’ve been 100% pain- free.
Of those days, I’ve had pain ranging from mild, to oh-my-goodness-I-think-I’m-gonna-die. The ambulance has been called many times, I’ve had lots of hospitals stays and countless hours at A&E. When things get to this point, it’s pretty much established that you’re experiencing a flare.
But how do you handle your illness when doctors say the Lupus isn’t active but you still have a full list of symptoms? And do you identify yourself as a sick person? Or someone that is sometimes sick?
When you consider that each medication carries side effects, that fatigue cannot be treated and that sometimes what’s happening in the mind manifests itself physically, Lupus is a miserable bastard that is ALWAYS present.
To be a functioning member of society, there are certain things that you have to do. There are the fundamentals like to work and go to school. Then there are the pressures to fulfil your role as a parent /sibling/friend. Then we have to find the time to be social, to exercise, to care about your appearance, to be fun, ambitious and interesting human beings. Basically, to keep up with the (healthy) Jones’s. The pressure we feel and the pressure we put on ourselves makes it hard to choose rest over the 25 things on our to-do list. Sick or healthy, these demands have to be met.
For most people, you are either well or unwell. You either have the flu or you don’t. You either have a chest infection or you don’t. You either have a sprained wrist or you don’t. When most people are ill, they take time to rest and recuperate and eventually the illness leaves and you get back on with your life. Chronic illness is defined as persistent and long lasting. Lupus is both chronic and incurable. How do you manage a life where illness will never leave?
In my case, I always feel ‘ill’. At some point in every day, I have to factor in a time to rest or sit down to give my body a break. This doesn’t fix the problem, it’s just how I choose to pace myself. When I know that I’m not ‘flaring’, I can still have pain, nausea and fatigue for example, but I can tell the difference between this annoyance and a flare. It’s a routine I’ve gotten used to and it sucks.
It’s hard to wake up everyday and know that you’re going to have to hide exactly how your feeling, plus none really wants to hear about it, let’s be honest. It’s also easier to keep quiet and carry on for more serious reasons. (such as wanting to protect your job.)
Most people are nice and will always ask, “Are you feeling better now?”, A question that is both very sweet and at the same time able to break your heart. I’d like to be able to say, “No, you’re never better with Lupus but I’m back at work because I have to. I’m just dosed up on more steroids and painkillers – but Thankyou for asking.” (P.S, I’d never say that! I’m too polite, everyone would feel awkward and they’d probably never speak to you again!!)
It’s so hard not to lose yourself to your illness. I was crying to my mum yesterday about a plethora of things that were getting me down and I said that I felt like the girl I was doesn’t exist anymore, I can’t remember her and I feel like she died a long time ago. She was so different to who I am now. I slowly stopped living her life and all I’ve known for the last 10-11 years is myself as a sick person. I’m sick all the time, it’s just that some days are better and some days worse. It’s not something you get used to, you just have no choice but to carry on.
We all handle our illness differently but I’m finding that the trick is to steal special little moments that take you out of your illness bubble,(Art/music/relationship/travel…) It’s these things that will ultimately help improve our quality of life and help to redefine the person ‘created’ by Lupus.
Here’s hoping that one day we can honestly answer, “Yes, I’m feeling great thanks”.
Thankyou for reading XOXO