Lifting The Veil On Invisible Pain
“Not everything that is faced can be changed but nothing can be changed until it is faced.” - James Baldwin
For many years denial was my friend. Or so I thought because it always felt better when I told myself that my JRA wasn't so bad, instead of acknowledging real challenges I faced. When people asked how I was doing I always got a more positive response when my answer was, “fine,” regardless of how I was really feeling so I convinced myself that I WAS fine.
There is one small problem with all of the things I was telling myself and the people around me. None of them were true.
If the truth shall set you free I've lived in prison for most of my life.
I've been lying for a good reason. The truth of my life is complicated and uncertain, two things none of us are good at handling very well, especially for a lifetime. My young mind wasn't ready to handle this and because I didn't express my complicated feelings to anyone I was destined to handle them alone. In some ways that made things easier- by not talking I didn't have to worry about other people's reactions. I didn't have to explain my pain and the feelings that came with it. And I didn't have to hear the reactions that at times were so off-base and not helpful; comments that made me feel worse, not better.
Time for a change
I decided to change this modus operendi, partly because in writing about my experience I have become more contemplative about it and in doing so I've realized that avoidance is not a healthy way to live. I decided that there had to be an authentic way to share my experience of pain with others that didn't elicit pity or induce unhelpful comments. It sure was an easy pattern to get into though, and a bit surprising how easy it was to not talk about it for so long. Even extreme pain can often be invisible to those around you.
Consider this quote from Elaine Scarry, The Body in Pain:
For the person whose pain it is, it is “effortlessly” grasped... while for the person outside the sufferers body, what is effortless is not grasping it, (it is easy to remain wholly unaware of it's existence....if with the best effort of sustained attention, one successfully apprehends it, the aversiveness of the “it” one apprehends will only be a shadowy fraction of the actual “it.” Thus pain comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed.”
“To have great pain is to have certainty: to hear that another has pain is to have doubt.”
When I first read these words I had to go back and re-read them a few times. They were so profound and so devastatingly true. Your pain is yours and yours only. Others can empathize and support you on your journey with pain but when they leave the room they don't take your pain with them, instead they leave it blissfully behind. This is why pain, even obvious pain, can easily become invisible.
The truth is, if I gave my loved ones and friends a complete answer when they ask how I'm feeling it would take awhile. I've found that a brief synopsis is the best answer 95% of the time for both parties. However, this doesn't help my desire to stop telling myself and the people around me stories to minimize or deny my pain. So, what does one do when pain is so invisible to others, yet in order to live well with pain, it is important to foster connection and support, which requires talking about it?
That is the million dollar question; luckily I have a few ideas.
The first suggestion I have for you is to forget everyone else for a bit and think about how you talk to yourself about your pain. Think about how you talk TO your pain, because your relationship to your pain is one of the most important relationships you have. Once you start paying attention to this relationship I promise you that you will discover at least one thing about yourself that you don't know, something that can be tweaked or changed in order to feel better within the experience of pain. Look for signs that you are feeding into negative ideas about yourself or your pain. Are you a victim to your pain? Do you rant at your pain in anger and frustration? I've said yes to both of these questions at times, and my yes answer spurred me to change my self-talk.
Once you are more familiar with your pain then you can change the way you talk to others about it. The reason for language in the first place is to convey information, and over the years I've lived with JRA I've discovered that how I convey the information about my pain to others is vitally important. When you open the veil and become visible, who do you want others to see? I decided early on that I didn't want to be seen as a victim, and I didn't want to be coddled, so when I began to talk more about my experience with pain I made sure I was realistic without being fatalistic. I found that giving examples that people without chronic pain can relate to is helpful; for example I use the analogy of a sprained ankle or broken leg as equivalent to bad pain days. Because I don't have the memory of life without pain I've realized that I assumed a level of understanding that most people luckily don't have. Now, I am as specific as I can be about how my pain limits me with others, but I always make sure to emphasize how changeable my situation is, that things can improve to a certain degree. And I don't expect the people around me to always have my pain on their radar. It isn't fair to them and it doesn't mean that they don't care. It just means that they aren't burdened with pain, and that is a good thing.
I think the most important thing about lifting the veil off your pain is to be gentle with yourself. Don't expect to always have the perfect response, or the best description, and it's okay to feel bad when things don't go as well as you'd hoped with the people around you. This is tough stuff, so give yourself a break, but don't give up, because you and your life are worth it.
When was your last flare?