BY: Emily Steward
When I was first encouraged to write my blog I wanted from the outset for it to be a true and honest reflection of what life with a disability is like. I wanted it to cover the highs and lows that people with disabilities (and their nearest and dearest) experience. I wanted to challenge the image that mainstream media often paints, i.e. that people with disabilities are somehow less able than their mainstream counterparts in aspects of life including employment, family life and relationships. And I wanted to do all of this by making people stop and think. By making people laugh. By humanizing and normalizing disability. By tackling taboo topics and hopefully removing some of the stigma attached to disability related issues.
Today I want to share about something a bit grittier. Something people with disabilities are often embarrassed to mention for fear of making others feel awkward. Tonight I want to share a little bit about life with chronic pain. Something I live with on a daily basis.
Right now I am in the middle of a particularly fierce battle with pain. It’s a war (for want of a better word) that has rumbled on for as long as I can remember, but has intensified over the last decade as I have experienced a number of complications both post-operatively and as a result of the increasing demands placed on my body as I have grown. Acute, traumatic, nociceptive, neuropathic, mechanical, visceral. All words used by healthcare professionals to describe the pain I have experienced over the years. Words which never quite seem to hit the nail on the head in terms of defining the impact such pain has on the functioning of a person.
So let me tell you a little bit about life with chronic pain.
Pain is an indecisive beast; no two days are the same. Some days the beast can be quiet (ish). Other days it feels like a hippo is tap dancing through your body. While wearing stilettos. Whichever sort of day it is, there will always be a consistent nagging pain that never quite leaves
The thing with chronic pain is that you go through phases. Phases where things feel vaguely manageable and phases where everything seems horrendous. Unfortunately the last few weeks have been the latter. It has genuinely felt like a whole troop of hippos have been practicing for a dance show, stamping their pointy stiletto-wearing feet throughout my entire body!
Nevertheless, life has continued. In case you didn’t know, I have the privilege of working as a specialist speech and language therapist in neuro-rehabilitation. This means that I have the opportunity to work with some incredible individuals who have experienced illness and injury we can only imagine. One such patient commented to me last week that I appeared more subdued than normal, and that my smile “didn’t quite meet your eyes today.” She asked me why and I told her that I was in quite a lot of pain that day. She smiled and commented that she’s slowly learning to live with her newly acquired chronic pain (post nerve injury) but that her family were having a difficult time getting their head around it. We talked about the things we would want people to understand about chronic pain and I thought I would share a few of our thoughts. In no particular order…
1. We’re not trying to be grumpy, we promise.
The thing with chronic pain is that it is utterly exhausting. I’m not talking “a little bit tiring,” I’m talking the kind of tiredness that no amount of sleep seems to cure. The kind of tired which makes every single atom of your body ache and cry out for bed time. However, when that blissful moment of crawling into bed finally arrives, it seems that every pain fiber in your body chooses that moment to come alive once more. Your friend the tap dancing, stiletto-wearing hippo of pain puts on his sharpest heels and has a boogie around your body. Cheeky bugger. So when we get up the next morning feeling totally unrefreshed, please don’t take our grumpy and aloof behavior as a sign that you’ve done something wrong or that we are in a mood with you. It probably just means we are absolutely exhausted!
Words of advice from my fiancé: “In this situation, I just throw chocolate at Em and run away.”
Note from Emily: “It works.”
2. Being in pain does not stop us from wanting to look good.
“But you look great?!” is a phrase I often hear when I’m asked about my pain levels or how well my ongoing medical issues are being managed. Taking an interest in my appearance — doing my hair and putting makeup on each day — is all part of helping me to feel “normal” and allows me an element of control over what can be an unpredictable journey with chronic pain. On really bad days, doing my hair and putting my makeup on is akin to gearing up for battle with makeup my war paint and a pretty top my body armor. Just because someone’s makeup is immaculate and
they don’t look poorly doesn’t mean they’re not struggling. That being said, weekends are often a chance to just totally switch off from the world and I’m regularly seen sporting a massive hoodie with my hair scraped back from my face! The public is not quite ready for that sight…
3. “Just take another paracetamol” will not work!
I promise you that if a person with chronic pain could end their pain by taking just one more paracetamol, they would race you to the medicine cupboard! Fact of the day.
4. Pain does not always stop us from smiling (well, not all of the time).
People who don’t know me well have often been heard to say, “But she smiles so much, surely it can’t be that bad?” The truth is this — the presence or absence of a smile is not a reliable indicator of the pain levels of a person. I have been fortunate to have grown in a family purporting the power of the “positive mental attitude.” Throughout the challenges and triumphs of the last 26 years, we as a family have found that smiling and laughing is not just good for us physically, but is good for us psychologically. Any person with chronic pain (and their friends and family) will tell you that the biggest battle with chronic pain is the psychological one and that this is where the battle is won or lost.
5. We’re not “sufferers.”
You may have noticed that throughout this post I have avoided using the phrase “chronic pain sufferer.” This is something I have done deliberately. My patient pointed out very eloquently, “I’m not a sufferer. Pain is not something which is done to me. It is something I experience. But I also experience joy, happiness and success. Our pain does not define us.”
I could not have put it better myself.
6. We’re not being anti-social, we’ve probably just run out of spoons.
A lady by the name of Christine Miserandino penned “The Spoon Theory,” a wonderfully apt description of what it is like to live with a disability. She explains that each person with a disability is given a finite number of spoons for a day, with spoons serving as a form of currency to be spent in order to complete daily tasks. Each task needing to be completed costs a spoon. Whether this is as trivial as getting out of bed or climbing the stairs or as big as giving a presentation at work, each of these tasks has a cost measured in spoons. Whereas our more able bodied counterparts have an infinite number of spoons, a person with a disability does not. Every little action, movement or choice costs the person with a disability a spoon.
Staying up late to watch a movie with friends will use up precious spoons, meaning that we might find it 10 times harder to get dressed the following day. Overstretching ourselves to go to a friend’s birthday dinner at the end of a long working week will mean that we run out of that day’s spoon allocation and have to eat into tomorrow’s spoons. Too tired to drive home, we have to hail a cab. So although it may come across as us being lazy or flaky when we cancel at the last minute, it may just be that for whatever reason, we have run out of spoons. It doesn’t mean that we don’t want to see you. Chances are, we are sitting on our sofa wishing we were with you.