I’m not fine. Every day well-meaning people ask me how I’m doing. It is a social convention. I reply cheerily “Hanging in.” And I am – even if by a most gossamer thread. I did not mind this question before the bottom of my spine bent into my body at a 90 degree angle and caused me daily agony. I was mostly a positive person. I still am. I try not to put the burden of this pain on anyone else. I still work each day. Today was my first sick day of the year because the magnitude of the pain was such that breathing was difficult and overcoming the nausea was not really possible. But while today was the first day of the year that I took a sick day, it does not mean that there is much of a reprieve on any other day. After dealing with this pain since May 2015, I occasionally have a good day. But every moment of my life is regimented by this pain. It does not go away. It might not be less pronounced and that is a great joy, but it does not go away. It is agony even on the good days because they are only good in comparison to the bad days. If those “good” days were to have happened in April 2015, I would be very upset by that degree of pain. So this pain is what I am used to. I structure my day around it. I goad myself to write one more email. To review one more document before I reward myself with a peach or lie down for 15 minutes during my lunch break. I spend most of my evenings lying down so that I can work the next day. I do not clean my stove anymore because of the pain. There are lots of things I do not do so that I can do what I must do.
I work at my standing desk. This takes the pressure off my spine. However, the muscles in my back and core are fatigued by this as are my legs. I stand on a yoga mat and memory foam pillow so that I can bare to stand for 10 hours to work and do my school work. My shoulders and ankles and neck and knees try to compensate for what my back cannot do. So they hurt too. I get headaches and stomach aches from the accumulated pain. My appetite is all over the map. Some days I can hardly think of food as the nausea is so intense. Other days I’m ravenous. I’ve been following Weight Watchers for years, and I’ve maintained a significant weight loss during this pain, but on a day to day basis my weight can fluctuate as much as 6 pounds from the changes in appetite.
I try not to talk about this with anyone. There isn’t anything they can do except offer sympathy. I don’t want to make people feel bad. I don’t want to make them feel as powerless as I do. I don’t want them to be angry that there isn’t an easy solution. I sure don’t want to hear any more platitudes about feeling better soon. It has been 9 months; feeling better soon is not in the cards. I talk to my partner and my parents and occasionally a friend, but even then after a few sentences I feel self-conscious about the negativity of it and how desperate I sound. And of course there is the fact that there are so many people who have other problems that are certainly worse. I am grateful for what I do have, but that unfortunately does not make my pain go away.
I struggle with a version of impostor syndrome. I am able to work – thank heavens! I have no choice as I need to do that to take care of myself and others. So the pain must not be that bad, right? Yet it is. I approach each phone call for work with a sort of manic jocularity. That is how I cope, not a sign that I’m not in pain. But who would understand that? That is how I protect myself from letting other people down, from letting myself down. That is how I convince myself that I can do this every day.
And so I write this for anyone who has suffered, is suffering or will suffer from chronic pain – for those who need to know that someone else understands. Seeming normal, faking it and acting happy when you are broken and hanging onto a shimmering thread to get through each day is not easy. I know why you do it. I know.