September is International Pain Awareness Month. Now, I know that sounds like a bit of an unnecessary one. We all know pain is real, we know it exists, why does it need a month? Well, as someone living with chronic pain, there’s a lot that people DON’T KNOW, or assume instead of actually finding out. So, the hope of this International Pain Awareness Month is to inform, to educate and to hopefully bring a greater understanding to the larger population lucky enough to not directly experience chronic pain as to what we’re going through.
I write a lot about my journey with chronic pain in the hopes that it will help others who are in the same boat. It is also a record for myself about how far I have come, and the steps I have been taking to fix myself.
Living with an invisible illness is difficult, both for logistical and psychological reasons. Despite living this way for the past five years, I still find myself catching myself to try not to be “other”, even when it is to the detriment of my comfort. It can be hard to get your head around it being your new normal, and as an adult that others won’t be looking down on me (I would hope) for simply using the tools available to me to ensure that my disability doesn’t hold me back. Recently I had to use the word disability to describe what I am living with(my chronic pain and depression), which it is, but placing the words onto it seems to add a level of permanence to the whole thing.
I did so because I understand that in order to progress to the next stage of my life with minimal disruption to the somewhat flow, I will need help, aides along the way, and those aides don’t come along like a magical click of a fingers from a fairy godmother. As I am about to pursue a masters, which I am VERY excited but nervous about, in my alma mate UCC. They are aides which will hopefully reduce the amount of stress I will encounter throughout the year through the use of the Disability Support Services.
In the last five years, I have strayed away from using the word disability when it comes to my health. It’s not from any shame perspective but I think for me that word made what IS permanent (and there’s no denying it, I’m stuck with it), SEEM more permanent to me. It is a wonder of the power of language that such a small thing can have such an influence over the way we think, but this morning felt like a big deal to me. This entire process is a big deal.
I would never be in this position, doing this course, a masters in Public Health, had I not gone through the last five years. It’s been hard. It’s been a struggle. I’m in pain every day, on so much medication I rattle, and doing this on a wing and a prayer that I will be able to complete even the few hours this course entails. But I am taking the lemons life flung at me and I’m making… well, if it’s not lemonade, maybe it’s something else, we’ll have to wait and see. I’ll be documenting the whole thing throughout because I think it is important to share the ups and the downs so that others in the same boat can see it isn’t just them. That’s the point of the pain awareness month too – it’s about us talking about living in pain and what that is really like. It’s about opening up the windows and shouting when the days are a bit shit, and celebrating with others when we’re having better days.
Understanding the situation that other people live with when it’s completely alien to you can be difficult. That is what I have found when talking to other people about living with chronic pain. The definition of chronic seems to elude some – asking if I’m better “yet” or if I’m “still in pain” (nope and yes). That’s not their fault. It’s not something in their orbit. But it can be hard to have the people around you seem to not “get” what’s happening with your life, so I’m hoping that in discussing it and explaining things that it might be easier to explain to them, or simply send them a link to read as a primer. I’ve written about the entire Spoonie community and that way of speaking about life with chronic illness. I shared my experiences of parenting with chronic pain. I’m planning on sharing accounts of what receiving particular treatments like taking biologics (and them not working out) and getting facet joint injections and rhizotomies are like – all the things I wanted to read before embarking on this journey.
This month, I hope to write a bit more about life with chronic pain – is there anything in particular you’d like to see? Let me know in the comments or over on social media (the links are below). I would love to hear from you.