Do you ever feel like people on the outside really don’t understand your chronic illness. That they can’t fathom that the foreign word you’ve uttered to them might mean utter devastation to the life you once knew? I can’t tell you how many conversations I’ve had which go something like this:
Them: “Heeeey, I haven’t seen you for ages, what are you up to now?”
Me: “Not a lot really. I was diagnosed with a seizure disorder, Fibromyalgia and spinal issues a few years back so I’m not doing anything exciting.”
Them: “So where are you working now?”
Me: “I’m not able to work at the moment, I’m trying to navigate and manage my illness around my new found limitations.”
Them: “Oh. Don’t they have medication for that?”
Me: “Erm well yes, but it’s very complicated unfortunately.”
Them: “Well you look well, I’m sure you’ll be back to normal and working in no time.”
Sound remotely familiar? I know I have high expectations to hope that one day, someone I come across may understand that when I say I have a chronic pain condition, their response shows that they identify with the severity of my plight. Until that day comes, I will try my best to educate those people, whilst also trying to be a voice for, and to, those of us in the know. To say the things we think, the things that plague us and make living with this that little bit harder. To connect us through brutal honesty; what I write about here is meant to reassure you that there are people out there who understand your fight, your worries, your grief. I lay everything bare here, in the hope that it may bring you a modicum of comfort.
Ok, so I’m about to hit you with something quite controversial…
Disclaimer; Anything I am about to say is in no way meant to offend or diminish the suffering of people on the opposing side of this comparison. Despite the fact I have clearly just used the noun ‘comparison’ I’m not actually intending to compare, not literally. It’s an observation on how outward perceptions differ surrounding a given diagnosis. I’m sorry if this seems to be a naïve and stereotypical blanket opinion of how any given persons’ situation, battles or support are perceived. I will explain myself so please, if you’ve gotten this far, I’d love it if you’d humour my ramble a little longer!!
Seemingly off topic, but this will start to make sense, I promise…
So tonight I decided to get comfy on my bed with the dudes, sort through a bit of paperwork whilst idly enjoying a Netflix treat in the background. Suffice it to say, my intentions were ultimately thwarted by my choice of film. The idea that the film was for noise in the background was somewhat idiotic of me. Of course I’d ignore what I planned to do to watch Joseph Gordon-Levitt in all his glory. Who wouldn’t?! Anyway, one of my all-time favourites with said hottie, is a film called 50/50…seen it? No? Right ok, I’ll sum it up for any of you who may have forgotten the gist, those of you who haven’t seen it…SHAME. ON. YOU. So Joseph Gordon-Levitt (lets refer to him as JGL for the sake of word count) plays a character in his late twenties who is diagnosed with a rare form of Spinal Cancer. The film obviously revolves around JGL’s medical battle with this hideous illness and more poignantly, his emotional and psychological status as he tries to navigate his way through; diagnosis, treatment and juggling the needs of those around him and facing more than his fair share of personal hardship. All the while trying to masquerade from the horror of his likely impending death, at a tragically young age.
I know, I know; where am I going with this right? Well the film got me thinking. This isn’t the first time I’ve thought along these lines and there is a very select few people I’ve been able to make this controversial stance with in person. For anyone reading this, I can almost guarantee that you’re a chronic illness sufferer, with most likely one of the many so-called “invisible illnesses” that plague a huge proportion of people. (Maybe you’re a supportive friend or family member, trying to learn in order to better understand and ultimately, help as best you can. If that’s you, bravo!)
Let’s start with this; think about the last stranger you had to tell about your diagnosis. Doesn’t even have to be a stranger, because honestly, there’s rarely a call for that. So maybe someone you haven’t seen for a long time, an old friend or colleague for example. Picture their response, or lack of? Did they know what it was? Heard of it before? Knew what it really meant? As in how it has genuinely affected all areas of your life? Can you picture their response…ok good.
Now imagine you told them you had cancer.
Forgive me for saying this, again, I am in no way trying to diminish their suffering or think that I (we) suffer more. My point is the outward perception we get from others in comparison. I want to also clarify here that I’m not suggesting this has anything to do with levels of received empathy. I’m not sat here having a tantrum because I want sympathy. A pity party is not what I’m getting at here. What this all boils down to is understanding the sheer magnitude of the multifaceted battle a Warrior faces each and everyday. I want to be a respected, independent, functional member of society; whilst also carrying off a level of immaturity way below my years but which also serves to paint me as a fun-loving, one-off quirky yet determined individual who knows laughter is one of the best medicines; at the same time, scaring you a little bit, for reasons you can’t quite fathom, but which is highlighted by my impressively fierce resting bitch face.
Anyway, my point, we are immediately at a disadvantage by the name, stigma or understandable ignorance to what ails us. The category of “Invisible illnesses” seems to be growing by the decade, but despite the abundance of titles there is one overriding characteristic they all have in common. They are a kin to icebergs. What you see barely equates to a tenth of the sheer magnitude of issues being dealt with. This is before you add into the equation how a chronic illness extends its’ impact through to loved ones; husbands, wives, children. Inevitably causing a ripple effect throughout your close social network. Understandably, they are also plagued with the stigma and misunderstanding of your illness; they don’t get recognition for what they go through caring for a person who suffers daily, or how this massively impacts on them, socially, emotionally, mentally, physically; inevitably, they are left misunderstood and unsupported too.
I’m obviously using Cancer as my example (but there are countless others), which is understandable; try to find one person on the planet who hasn’t heard of, had or been touched by its’ life shattering destruction. As a species we know how to react to it. We know the severity, from the psychological aspect of coping with a diagnosis, not just for the patient but also, for family and friends. We understand the complexities and unpredictability of treatment. The lack of guarantees. The fear component, which brings a darkness to every facet of life; family and relationships, work, social and not forgetting day-to-day capabilities, physically, emotionally and mentally. We understand how harsh the treatment is, breaking your body down to zero and bringing a thousand unwanted symptoms knocking down your doors. We know Cancer comes with a million unanswerable questions, a path that must be walked blindfolded. We all have a semblance of knowledge when it comes to treatment protocols, from chemotherapy and radiation, to surgery. Each one plaguing the patient with; “what if’s”. Will this work? What would we do next? How can I live my life through the sickness that inevitably comes with breaking your immune system down to zero? Loading your body with treatments which are otherwise extremely toxic. Ultimately, I can only imagine what torturous thoughts and questions go through the mind of a cancer patient, but I’d stake a high bet that one of the biggest questions to ask is; Will I get through this…..Will I beat cancer?
With that thought firmly placed in your mind, ask yourself this…What is the biggest, most important question you’ve asked yourself with your own diagnosis that goes (for the moment at least) unanswered? I’ll be perfectly honest with you, without meaning to sound unnecessarily dramatic, but for me it is; “will I get through this?” I apologise, I know it is not the same thing. I know my condition isn’t terminal and again, I am in no way trying to trivialize the horror that is cancer. But in the same breath, I’d like to defend my reasoning. I may not have been given a “stage” or guestimation on life expectancy, but my life has irreparably changed. I will carry this for the rest of my life and one way or another, have struggles because of it. I believe that the severity of my struggles will go through life’s expected peaks and troughs, but I will still have to be more mindful than most when it comes to truly taking care of myself. So I implore you, does the lack of finality of my diagnosis alter how circumstantially, the losses I’ve endured, the treatment, the fear, the pain and suffering and not least, the questions, mirror that of something which is much more culturally accepted as devastating, like Cancer.
I’ve got to admit, chronic illness takes a lot of discipline to emotionally and mentally navigate. To see the road ahead of me as an adventure, to be in line with who I am and who I need to be, to forge a future for myself of living, not just one of existence. To trust myself and my strength, my determination to succeed and my stubbornness to carry on. The alternative is to see devastation. To be consumed by fear, grief and negativity in such a way that the only visible future is one of hardship, continuous pain and fatigue, discontent and adversity. I point-blank refuse to lower my expectations of life. I will not lead a mediocre existence.
Society needs to understand that the battles we face are not a choice. That a title to an illness, “Fibromyalgia” for example, does nothing to explain the never-ending list of debilitating symptoms sufferers battle day and night. This is true across the spectrum. We too have a list of symptoms that are hard to count. We are also plagued with pharmaceutical side effects that make you question their efficacy; whether the benefits out-weigh the new struggles you face. We too wonder whether our entire lives will be a constant minefield of pain. Will we get through it? How can we live through it, maintain a job, support ourselves, love ourselves enough not to give up, to know we deserve better, to keep fighting.
Pain is a notoriously tricky beast to tame. Its subjective. A whole host of additional factors can increase or decrease its intensity. Emotional and mental well-being, diet and lifestyle, general life stresses, even menstrual cycles can affect not just your tolerance levels, but the volume and spread of it on a daily, sometimes hourly basis. It’s individual. An analgesic which works for me may not work for you. Medications come with side effects which may initially decrease the pain it was prescribed for but unfortunately, cause 10 other issues which inevitably result in an unexpected increase in the original trigger. Side-effects can be absolutely debilitating. Like me, leading you to question which path forward is the most productive. It’s not an easy thing to evaluate, not just for ourselves, but by medical professionals who are just trying to interpret the information we give them and treat accordingly. There is no true clinical way of measuring pain levels. There is no “ECG” for pain signals and intensity for diagnosis, then treatment. A Dolorimeter will measure ones pain threshold and tolerance, but it doesn’t give you a number out of 10, which in turn then conveniently points a physician down the correct route for treatment.
I’ve said this before and I’ll say it again, I feel there is too much of an emphasis in today’s world on listening to respond, rather than what we should be doing, which is listening to understand. That is true of nearly all-verbal communication. Whether it’s between the greatest of friends, lovers, or the worst of enemies. Listening to understand, to summon your compassion, is the recipe for success in most situations. I mean, I’ve read enough crime fiction to know that we have hostage negotiators proving this point time and time again…may have just foiled my argument there but I’ll carry on regardless. So to sum up this epic rant I’ve been on; first and foremost, have compassion. You can never truly know another’s’ path. Whether your married, in a relationship, kids or not, we all walk this path alone. Nobody in this world knows what it is truly like to be you. To feel the things you feel. To have been shaped by the experiences you’ve had and to carry those memories inside you, the good, the bad and the ugly. Treat people how you want to be treated. You don’t know what battle they face as much as they don’t know yours. Your unique set of circumstances, which have led you right to this page. To wherever you are now. It’s important to remember that your experiences don’t diminish someone else’s, as much as theirs don’t diminish yours.
Things will always be different for me, for us. We all have our own set of unique circumstances, obstacles and demons to live with, no matter who you are. None of this defines us. What defines us, what makes the differences between living a fulfilling life, is how we meet these challenges. It doesn’t matter that we fall, it matters that we pick ourselves up, each and every time. Stronger than before.
We may not “look” sick, but if you could see it, you’d never judge or doubt us. For me, all I want is respect. I don’t want sympathy or pity. I want you to truly understand that I’m doing the best that I can. Respect the trials I face, knowing how much strength it must take to walk a mile in my shoes. Until the day these chronic conditions are socially accepted for what they are, we must support each other, whole-heartedly.