“Pain is as diverse as man. One suffers as one can.” ~ Victor Hugo
Saturday, October 5th, 2002, was my last pain-free day. Nothing remarkable happened that day but I remember the date specifically because of what took place the following day, which started a whole new chapter of my life. On October 6th, sometime in the afternoon, pain entered my life never to leave again.
I do not remember what it feels like to be pain-free. I am talking physical pain, here. Maybe I should feel sad about it but the truth is I don’t. For one, it just is. Nothing I can do about it and I have accepted it. Fully. Also, I am happy.
Living with chronic pain doesn’t get easier, it just becomes life. Creating a new normal for myself has been key to finding my happy place, not thanks to the pain but because of it and also in spite of it. There are things, that I constantly have to get used to, however.
When someone who genuinely cares asks me how I am doing – I am not talking about the empty “how are you?” you get in and out of the elevator – my point of reference to give my answer is the worst day I have ever experienced or at least the last worst day I remember. When it is bad, it is bad, and ranking bad days from best to worst is kind of counterproductive and useless. So, in my mind, if it is much better than my last worst day, it is good, and my answer is “I am fine”. Basically, if it is better, it is good. I don’t lie about the bad days but I don’t necessarily go into details either. Even with people I am close to, I rarely do a rundown of the situation unless they ask specific questions about a particular issue. Beyond that, I avoid it because pain is always there, everywhere, all the time, in different ways, and in order to properly describe what is going on in my body at any given time I will have to recite the laundry list of where the pain is tingling, burning, stabbing, and/or shooting. I rarely do it because not many people need and want to hear about all that and also because it causes me to have to think about all these different types of pain much more than I care to. As surprising as it might seem to those of you who have not been through these types of things, I don’t think about my pain. It is here and I feel it constantly and deeply, but I don’t think about it. The only time I do is when I have to talk about it, usually at the doctor’s office. Each week, at the clinic where I get the injections for my back, I have to fill out a form describing with numbers from 1 to 10 (10 being the worst level of pain felt) how the pain has been since the previous treatment and how I am feeling from head to toe as I am filling out the form. I can’t just give a vague response that would kind of answer the question, I have to grade each part of my body that is listed on that piece of paper, and so, in that moment, I am forced to think about the pain in general and the different kinds of pain going on at once. Let’s just say I am glad I only have to do this once a week.
Coming to the realization that it was less complicated for me to be chronically ill and disabled while overweight and walking with a cane than smaller and on my own two feet was troubling and is still a little unsettling, I have to admit. The reason is that the extra pounds, and what came with them, as well as the walking aid, were visible proofs that something was wrong. My big belly, swollen feet and face, made some people, including neighbors who didn’t know me, think that I was pregnant. Being pregnant is not an illness however it usually drives people to feel and show more empathy towards you. You must be tired. You must need to sit down. You must need to go first. My extra leg conveyed the same type of message: whatever it is you are dealing with, I can see it.
The few people who needed additional proof of disability surprisingly enough were the drivers from Wheel-Trans, the city service, who would pick me up and drive me to and back from my various appointments. In their defense, most of them, if not all of them, were bus or taxi drivers not trained to recognize what the wide array of disabled people might look like. When they hear disability, like most of society, they picture someone in a wheelchair, of a certain age, quiet, looking miserable and tired. I cannot tell you how many times I have heard that. When they get their itineraries and their list of appointments for the day, they go there looking for that disabled person to pick up. And they would see me, waiting at the pick-up point, either my apartment building or whatever doctor’s office or hospital I was leaving. They would see me and some of them would keep going because it couldn’t possibly be me. That perception is so deep-rooted that even I didn’t think I fit the mold. I could have started using this service as soon as I stopped working but I didn’t because I did not think I was disabled enough to qualify. I didn’t even think I qualified as disabled. It’s the taxi driver who used to drive me back and forth to my Thursday treatments who actually told me that I should give it a try and gave me the number. I was paying the rides out of pocket and when it became a regular occurrence, he gave me a discount, but he still felt bad for taking my money. My wallet and I are very grateful to him. I called Wheel-Trans, went to the interview and was approved within two-three weeks. The very first time I used the service to go to the clinic, the driver who came to pick me up after the treatments drove right by me. I was waiting in front of the building, next to a bus stop, my cane tucked between my legs, standing against a railing. He drove by, looked in my direction but his eyes went through me without actually seeing me. He was driving a regular taxi cab and I couldn’t know for sure if he was my ride but somehow I knew that he was and that he didn’t think I was his client. He parked his car at the back of the building and walked around looking for his disabled client. Not me. He looked in my direction several times without seeing me as the disabled client he was there to assist. The last time he came around, now sure that he was my ride, I started walking toward him and once we got close enough to each other he asked me what my name was. I told him and he said: “Oh wow! I saw you but I didn’t think it was you, you know what I mean?” I knew what he meant. Later, in the car, he told me that he expected someone much older, sitting on a bench and fragile-looking. As I said, not me.
Without visible signs of illness or disability, it is even more complicated and tricky. Don’t get me wrong, it feels good to be told that I look good and healthy, but it is also a constant reminder that for pain to be seen as legit it has to be visible. When you are in pain, the world expects you to look and act a certain way and it leaves many feeling as though they continually have to prove that their pain is real for it to be taken seriously. Going back to the “how are you doing?” question, not looking chronically ill or disabled makes this question even more loaded. When I stopped using my cane and started losing weight, I noticed that a lot of people would ask the question in a rhetorical way: “So, You are doing well now, right?” They did it because they associated whatever was going wrong with me with the more visible signs (e.g. the cane, the swollen feet, the extra weight) and the absence of these signs meant no more pain in their mind. I don’t blame them, they don’t live in my body and they have no way of knowing what is really going on. Also, in general, someone’s pain tends to make others uncomfortable and the longer it lasts the harder it is for them to deal with it. I get it. (I will write a separate post on the complex dynamic between the person in pain and those around them). When somebody asks you a question that includes the answer they want to hear, you have two choices: go along, whether it is true or not, or set the record straight at the risk of bursting their bubble. I already told you that I avoid going into details when talking about my health, and so when I am faced with that rhetorical question and I can feel how disappointed and confused that person would be if I decided to hit them with the whole truth of “No, actually, the pain is the same, it’s just not visible”, I usually just tell them that I am feeling much better, which I find to be the best compromise.
Pain that is invisible makes a big difference in the way others treat you. My close friends have a general idea of what is up so when we do things together that require physical efforts, they will ask every once in a while if I am ok but overall they don’t think about it. My personal trainer at the gym, who knows all about my situation, routinely tells me that she forgets that I am far from 100% healthy. People who see me going to the gym three times a week like clockwork think that everything is alright now. To be honest, I am not mad at the fact that people don’t think illness or disability when they see me because I am not looking for pity or special treatments but not showing signs of it makes it harder to explain why there are still things I cannot do, why I am still not working, why I no longer take pain medications if I am still in pain, why I have to pace myself when I go out. Most of all, it makes me feel for all the people in my situation, whose illness and/or disability is not visible, who need a lot more assistance than I do and who have to prove their illness and/or disability in order to receive what would be given to them, no questions asked, if their pain was spelled out on their forehead. I am fortunate to not need much but I also realize that I sometimes make decisions based on that reality. The day I stopped using my cane was also the day I stopped using Wheel-Trans to get around. I still qualified and still needed it but I did not want to have to go through the trouble of explaining myself to drivers or other passengers. Instead, I started taking the bus and the subway again. Since then, when I use public transportation I stay away from priority seats, even if they are the only ones available, for the same reason. Technically, I should be able to sit in them but what proof do I have that I am indeed in pain. None. And my word wouldn’t mean more than the word of someone who would be lying about it. When I do sit in one of those seats, which is very rare as I said, and a pregnant woman or a visibly disabled person enters and needs to sit down, I always offer to give up my seat, even if at that exact moment I am in excruciating pain or I am feeling exhausted, not because my pain and/or discomfort is not as important as theirs but because theirs is visible and mine is not, and in the eyes of society, that makes mine less legitimate, if at all.
I am fortunate to not need much but I also realize that I sometimes make decisions based on that reality. The day I stopped using my cane was also the day I stopped using Wheel-Trans to get around. I still qualified and still needed it but I did not want to have to go through the trouble of explaining myself to drivers or other passengers. Instead, I started taking the bus and the subway again. Since then, when I use public transportation I tend to stay away from priority seats, even if they are the only ones available, for the same reason. Technically, I should be able to sit in them but what proof do I have that I am indeed in pain. None. And my word wouldn’t mean more than the word of someone who would be lying about it. When I do sit in one of those seats, which is very rare as I said, and a pregnant woman or a visibly disabled person enters and needs to sit down, I always offer to give up my seat, even if at that exact moment I am in excruciating pain or I am feeling exhausted, not because my pain and/or discomfort is not as important as theirs but because theirs is visible and mine is not, and in the eyes of society, that makes mine less legitimate, if at all.
We live in an imperfect world where things are not always fair and logical, where minds, opinions, and views are hard to change, where we are all supposed to fit in at least one mold to be accepted and understood, where we have to embrace the labels placed on us to accommodate others, where pain has to be seen to be believed, where chronic illness and disability have only one face, where pain has to be explained, quantified, justified and compared… There are as many ways of dealing with chronic pain as there are people on this earth and there are no right or wrong way. We all do the best we can with the tools we have. Disability is a spectrum full of nuances, not a black and white concept where we are either fully able or fully disabled, although this is a myth that is hard to debunk. The only way I know how to navigate this world, chronic pain and all, is by being myself, which means doing what works for me.
Life has never been the same since October 6th, 2002, but I am still smiling. There is hope.