Have you ever sat frozen, macro-focussed on a certain predicament in life and wondered if this is who you are now? This is, in fact, how I’m living these days. As a chronic illness warrior, I’ll be honest- I’m not feeling very warrior like, these days. I keep reminding myself that this is a season, or that I should get over it because others have it worse. Do you do that too? Do you shame how you’re feeling by minimizing it? I have the terrible habit of this behavior, but as my husband has been struggling with some health issues I am finding I’m especially sensitive to his actions in that form.
With him it is a lot of “it’s fine… I’m fine”, and with me, my inner dialogue comes off a bit more like get over it, there are people literally dying of some terminal disease. Toughen up… Let me be clear, both are unhealthy behaviors. I can look at my husband’s life and trail exactly where it came from. With me, it has only been in the past year that I’ve really developed any clarity. You see, this negative (hateful) dialogue ran rampant with my miscarriages. It raged in my mind when I was hospitalized with tumors. It has coarsed through most of my life with this hip disorder. It is the voice I hear with every migraine, my hysterectomy and bout of uterine cancer. It was my constant companion as I was thrown into instant menopause at 24, and that trainwreck took assault on my endocrine system.
This is the voice… As of late, this voice is the loudest with my fibromyalgia and RA. It likes to remind me I should be healthier than I am, thinner than I am–more active than I am. It likes to guilt me into taking evening walks, even though the walk to the end of my block yesterday had me sobbing and certain I’d never make it home again–Intense pain so violent that vomit follows. This god-awful voice encourages me to make plans that I cannot possibly manage, and hold expectations suitable for a healthy person, which I can not meet. The voice is the very voice of shame, growing with me for most of my life.
And this time around, I see that for what it is, and I’m trying to out-voice it.
When I was a teenager I had horrible menstrual cycles. The bleeding was beyond heavy, the cramps were violent and the children’s home I lived in did not believe me. They took no effort to find out if anything was wrong, they simply declared I was fine. When I was 17 and had one of the most medically unusual miscarriages the team of doctors at our local hospital had seen, that same children’s home (where I no longer lived) went out of their way to make sure I knew they knew I was lying about that too.
When I was twenty-four, and underwent an emergency hysterectomy after a decade of heinous periods and a myriad of massive reproductive health issues, these same staff members emailed me to ask why I continued to lie about this part of my life and why couldn’t I just let it rest and be honest. (Ironically, years later in a protective conversation between them and myself regarding my sister, they would ask why I was so untrusting of their motives. What could I possibly have against them? When I reminded them of a few key incidents surround this very topic, they could not be bothered to remember them. They also assured me that, since they couldn’t remember, these things had never happened. The truth is that this voice of shame that long ago bore itself into my brain, always minimizing my conditions is their voice. It is theirs. It is the voice of the adults I trusted, when I was a kid… the voice of the adults who decided I wasn’t worth truly caring about– I wasn’t worth advocating for and I certainly didn’t deserve a healthier quality of life.
Chronic illness is so complicated, all on its own. Making it more complicated are the voices of a handful of people whose apathy weaseled its way into my psyche. These are the things I am seeing…
I asked my doctor if this immense level of pain is who I am now. Nearly six weeks ago it was deemed an injury, but as therapy and time have progressed, this seems to be less and less likely. Is this who I am now? My doctor said it just might be. I have examined the things I want to do that I may never get to… I have given thought to the griefs that come along with the acceptance of such things. I may have no control over my body, the levels of pain or the longevity of difficulties, but I do have the ability to diminish the voice of shame ready to loop.
This pain may be who I am now, but this voice (THEIR voice) is not.