For 2 consecutive therapy sessions with my psychologist, i turned up with acute flares in both wrists and knee respectively. When she saw the wrist splints and the knee support when i entered the consultation room, she asked me on both occasions, what the matter was. I told her as a matter-of-factly, that it was my RA flaring. Then she she asked me both times, something that no one else has ever asked me in my entire life.
“How does that make you feel?”
And that question made me think. It made me think a lot.
People with rheumatoid arthritis don’t ever get asked this, may i say, bold question. At best, we are posed with a mere “how do you feel?” and that is all. Period. In my 20 odd years with RA, no one has ever asked me that- no one asked how RA made me feel, or how my flares made me feel. All that mattered, it seemed, was how i felt physically, and more often than not, there were referring only to the ‘here and now’ (at the point of presentation).
It dawned upon me that perhaps how RA has affected me emotionally and psychologically has always been unimportant. On hindsight then, i came to a conclusion that i was conditioned not to talk about how i feel about me having RA, the frequent flares it causes, and how it affected my functioning. It was almost like a suppression, because i was denied of any validation of my complaints of pain when i was a child. The doctors never thought of it as legitimate- they brushed it off as ‘growing pains’, and delayed my formal diagnosis and any treatment till when i was 17.
Furthermore, after i was diagnosed, i talked little about the pain i was experiencing because i started to believe that others saw it as a great sign of weakness. I believed too, that talking about RA and the pain it causes, would make me very vulnerable. It became taboo. So i spoke little of it, and when i had to, i brushed it off- myself off- to avoid the pain of talking about pain. If i couldn’t even open up about my physical pain, what more the emotional and psychological aspect of it?
But to be brutally honest, i never thought that RA could hit me so hard emotionally and psychologically, until it progressed to unprecedented levels. It was only then, which was only several years back as a nursing student, that my eyes were opened to such despair and and to a multitude of other emotions that were intensified immensely. And when i fell into depression… It was just plain terrible to have depression and RA co-exist side by side.
Back to the initial question that my psychologist had asked me. I made very feeble attempts to give her answers, and i could tell very readily then that i was already feeling defeated.
“Hmm… It just makes me feel… very… very frustrated… and angry too i guess… But sigh… What to do??? I’m used to it already…”
My answer was peppered with heaves, sighs and pauses. It sounded absolutely pathetic, and is definitely of one who is a defeatist. It gives off a sense of resignation. My psychologist would know. But as much as i bare all my thoughts and emotions to her, i couldn’t even bring myself to say anything more than what i managed. That conditioning and the formed beliefs in me is that deeply-rooted, that i dare not say further for the fear of rejection and invalidation and the shame that comes along with it.
In my mind however, there was so much that has been bottled up,that i wanted to let out. How acceptance comes then goes when denial and anger takes over, how frustration takes over me more often than not, how indifferent i become at times, how self-neglecting i can be occasionally, how i still try to grapple with the fact that i’m living with RA for the rest of my life even though i’ve lived with it for 21 years, and how all of these thoughts and emotions have transformed into anger turned inwards, to the point where i lash out and berate at myself for everything that happens with RA. But i kept mum. They’re all unspeakable. Well, at least this was what i was taught, and is what i believe in so much.
I don’t speak for others, but i think this is what many RA patients and those who are chronically ill, feel, think and believe. And i find it sad that it has to happen.
Through these reflections, i hope to be able to make change happen. First for myself to see how i can make it happen. Then for my patients, by empowering them with change that is possible (especially those who are chronically ill, and more so with rheumatology patients). I did try rationalising too, on why it happens- maybe rheumatologists and other doctors and nurses just cannot be more empathetic because they don’t know what it feels like, and therefore do not know how to (i think awareness will do the trick for this). All of these will not be easy- in fact it is going to be pretty darn difficult. But i’m gonna try anyway.
Slowy, but surely.