Once the battle of being diagnosed with an illness, be it chronic or not, has passed – with elation, fear, and exhaustion – it is not long before the next battle comes.
For me this was “finding my feet”. I spent six weeks or so in hospital over the space of four months, as we sorted out my medications and relieving my symptoms. Once I was on an upward path, everyone began to tell me this little nugget of wisdom:
“You’ve got to find the positive strength to get through this”
Hear it a few times, you take it on board and try your best to be positive. All of the time. But you forget you are fighting your own body, draining yourself of important and fundamental energy that healthy people just don’t need to do or even contemplate doing. And on top of that, you feel somewhat hard pressed to be positive. Even when things go wrong. When your meds start to make you feel worse, you try and ride it out and hope it gets better; you don’t want anyone to think you’re not being positive about this terrible illness you have.
I tried about five medications in those early days without success. In this period, I hid away from people, quite easy when you’re stuck in hospital. On those multiple admissions, my doctors tried hard to figure out what was now causing me a problem, a pain, a side effect; just why I wasn’t getting any better. Then I received funding for a biological drug called Humira and it seemed to change everything. Once I could do my own injections at home, I had my disease staged with a MRI scan and I went back to work. This is when the big ‘push’ of practically everyone I saw telling me “how brave I was” and how it was “important I just tried to be happy and remain positive” throughout all my “bad spells”.
I didn’t have bad spells.
I didn’t feel particularly brave.
I wasn’t happy AT ALL.
This was the start of 2012. I was trying to find out who I was in a time where everyone wanted me to be happy that I was alive and well.
My bad spells were masked by my medication. It helped me a great deal but it didn’t fix me. It certainly would never cure me and I still felt awful a great deal of the time.
My bravery? I was utterly heartbroken as I mourned my old, wonderful, normal life that was now just an endless barrage of tests, managing my diet and tracking symptoms. Being in hospital for so long, being so unwell, made me paranoid about when I actually did feel well – Me? Well? Something must be wrong! Ensue panic!
I just wasn’t happy at all. I struggled to find my own new identity in being sick. I couldn’t deny what I had or the simple fact that I had it, so I sat and thought long and hard about what I wanted to do. What I wanted to be, who I wanted to be. I read books, articles, spoke to other patients, confessed a lot to my counselor and slowly I came around. But I struggled a great deal – and to a certain extent, still do – with being told to “be happy”. I don’t think it’s necessarily that simple, nor is it that easy to do. And why can’t you have some time to be angry about things, about this type of thing?
It is not easy to be happy all the time. It is incredibly hard and draining to be positive all the time. I appreciate good advice but not when it is being constantly rammed down our throats; from doctors, medical staff, loved ones, it’s all said with that compassion that leaves you feeling grateful, although through gritted teeth. I don’t feel as if I can be unhappy about my health. Especially now in my current situation; going through two major surgeries in four months, coming out with an ileostomy and a forever changed digestive system. Let alone how my scars and my actual ostomy makes me feel and look. I can’t always be smiling about it. I need to be angry, some times.
So, remaining positive; harder than it seems. More complex than first meets the eye. Not always for the best.
Please, let us be negative and grieve for a while.
Chronically ill people are the strongest and most resilient people I know. I’m sure that’s not just down to being positive, they get angry too.
Let us. We always come back to being happy and finding the funny side. Especially when it comes to bowels!
NB: Originally posted in Safe Space UK here.