Pain is a universal experience. Everyone will experience pain at some point in their lives, whether it be a stubbed toe, a needle poke from a vaccination, a scraped knee, or strained back. Despite pain effecting everyone at some point in their lives, the experience of it is completely subjective. Everyone experiences it in a way and to different degrees. It is greatly misunderstood and the experience of pain, especially when it isn’t linked to a blantantly obvious wound or visible mark is often stigmatized and judged. For those of us with chronic, largely invisible, illness that happen to have a pain component this can be one of the hardest parts to deal with.
I have chronic pain and it isn’t an experience I can easily hide. I have experience moderate pain in my legs my entire life. I have dealt with spasticity, which is when your brain tells your muscles to contract and engage even when they don’t need to and this plays a role in causing secondary painful conditions. The constant muscles contractions have put a lot of strain on my joints and I started having knee and hip pain before I was even in my teens. Now I have tendon problems and chronic bursitis in a few joints. The spasticity in and of itself is also painful. In the last few years it has begun to catch up to me even more and part of me wonders what role Behcet’s Disease is playing in this as well.
I have also written before about the lumps/tumors that have grown in my lower back in the last several months. Getting them evaluated has been difficult but we seem to be moving forward with that. Last week an MRI requisition was sent in to have imaging done and hopefuly be able to see what they are. We have ultrasounded them but they weren’t visible despite being easily palpable by even non-professionals. They were recently looked at by a physio, mostly to try to assess the pain in the area and it was determined that they are irritating the bone in the area and that I have a bunch of trigger points around it. All I know is that sitting is painful and I use a wheelchair. It kind of sucks and I would love for them to be treated or removed, but first we need to figure out what we are dealing with!
The point is that I experience a lot of pain. Somedays my pain levels are such so that even people who barely know me can tell I am uncomfortable based on my face, my squirming, and inability to focus. Somedays I am better at keeping it on the inside but I am still experiencing it. It is hard to explain to someone who doesn’t have chronic pain what it is like to constantly hurt. It is hard to make them understand how it impacts my ability to focus and get things done. It is hard for them to understand the psychological impact of constantly hurting. I am not sure I even what them to undestand though – what I really want is for them to respect my experience.
Pain is so deeply stigmatized in Western culture. If you have chronic pain you are seen as weak, as just looking for drugs, as an addict, as someone who just can’t cope well. Expressing that you are in pain, even to a doctor, can be incredibly hard. Pulling out a pill bottel several times a day to take a narcotic pain medication, explaining what the medication is for, it isn’t easy. What I do not understand is why this is the case when pain is a universal experience. Everyone will experience pain that brings them to tears at some point in their life. Everyone will take tylenol or advil for pain at some point in their life. Why is my experience so difficult to digest for the average person? I wish I had that answer and I wish I knew how to challenge it better.
The reality is that I internalize it rather than challenging it. I take on the discomfort of others as my own. I waited a long time to complain about pain to my doctor. I spent months convincing myself to ask to increase my medication dose because of tolerance. By the time I was talking about it I was desperate and it took several weeks to get started on a new path. I have been suffering as a result of internalized ablism and accepting societal pressure to just “suck it up” and “deal with it” but in trying to do that, I lost the ability to function and thrive. I was robbed of a lot of experiences as a result.
I started on a new medication last week. It wasn’t one that I ever wanted to be on. When I started talking to my doctor about pain I was pretty clear that non-narcotic pain management is what I was after but that isn’t what was offered and I have been desperate. The new medication is working. It isn’t perfect and we need to mess around with dosing, but the last few days have been significantly better. I know I deserve that and it is okay for me to hurt less and be more functional. Part of me is holding out for it to be fixed though. I want the pain to be cured, not masked. That is what I have really been begging for from my doctor but I know it isn’t possible. I know she can’t cure it, and I know no one can. Accepting this pain managment and this pain medication is accepting that the pain itself can’t be cured and it will never go away.
Feisty, Deaf and Disabled 