I vowed to myself before the clock struck midnight on the 31st December 2016 to indicate a new year and a fresh approach, that I’d be more open about my crusade with chronic illness and incurable pain over on my blog. Not just because it’s therapeutic for me mentally to let those burdens go but because for years I’ve felt alone with the stigma and misconceptions that tend to surround long term health conditions and I want to offer that supportive hand and reminder to the fellow spoonies who are at the forefront of these false statements that you’re not on your own – because, ultimately, a perfectly well human being with no experience of often unintentional but still deliberate discrimination against the sick and disabled do not have the right to paint you in a bleak light, to tell you how you should be feeling and to make negative assumptions on how you live your life alongside your illness.
You’ll know my tone of writing often lingers on to the lighthearted comedy side, not because I can’t do serious but because serious can often mould into despondency and I don’t believe speaking out about well-being has to necessarily be sombre and cursed. So, for this, I chose to express my feelings in typical Bridie manner – straight to the point but with a strong scent of sarcasm. I hope it resounds somewhere deep within!
“You’re wearing a full face of makeup and are well up on the latest fashion. You must be perfectly okay!”
What if I told you, your appearance and the way you carry yourself does not singularly define your physical and/or mental condition? Is it a shock to hear you can feel and look good despite not actually being good? Wearing makeup and taking an interest in personal style is just a part of me that’s separate to the reality of my struggles, it doesn’t represent anything of how I feel physically. With the small amount of energy I do have I can perform a miracle on my often drawn, exhausted face, an experiment with the latest lipstick and flippant couture can at least make me feel a little better and happier because in my makeup and clothing collection is where I can find myself, the person I used to be, the one who can still shine despite my attributes and qualities fading as the days go on. It’s so easy to lose track of your identity when you constantly have to put your health first and sprucing myself up after weeks spent laying in despair is a way to carry myself out of that fog. It’s not about giving false impressions, covering up, or pretending, it’s about having that one interest and hobby you’re still capable of enjoying. Admittedly when my pain is at its worst I’ll sack it off and stay bare faced in my pyjamas but despite our illness, we’re not completely incompetent. We don’t have to let ourselves go because our bodies are rebelling against us and we certainly have nothing to prove. So, the next time you get that judgemental, dismissive side eye from a medical professor, or a sly comment from a misunderstood ally who reckons if you really were that ill they’d be able to tell just by looking at you, then feel free to kick them up the arse with that high heel that is worn purely for your own esteem, not because you’ve found a fundamental cure through luxury cosmetics (trust us, if it was that easy we’d be following in the footsteps of Jimmy Choo or Charlotte Tilbury by now).
“You managed to go out for a meal the other night, functioned normally and had a laugh. Surely it can’t be that bad?”
Just in, newsflash headline: Chronically Ill Individual Leaves Home… because *shock horror* I still have legs, I still have to eat, and I like to make the most of my best days surrounded by the people who perk me up the most. What you don’t see is the aftermath, the following days spent in agony trying to make sense of why I have to be punished for relishing the precious elements of life. Making the wise (or not so wise) decision to have fun is always a challenge to a spoonie patient; chronic illness and social events aren’t a corresponding combination and truthfully, I’ll often push myself knowing how I already do or will feel because sometimes you have to convince yourself that swanky invite or opportunity makes the inevitable suffering worthwhile. Chronic pain and chronic illness are unpredictable and unscheduled, we don’t mark it on the calendar; 10th February I’m going to head to the shops, 11th February I’m on bed rest. Half of the time we attempt to build ourselves up in preparation and the other half it’s just sheer good luck that we’ve woken up to a brief relief. What you see on the outside is almost always opposite to what is happening on the inside. You sense I’m functioning normally, I’ve just learnt to act as though nothing’s wrong.
“You never say a word, I haven’t heard you mention feeling ill in weeks so you must be slightly better at least?”
You wouldn’t believe me even if I did tell you how easy it is to hide behind a mask, be totally crushed on your inner and outer shell and still portray a solidified smile without a whisper. Most of the time I don’t want to feel as though I’m complaining excessively, so I’ll just choose not to tell people how I feel and how my symptoms are affecting me; often only opening up to those I can completely trust and still, it’s downsized in severity. Silence speaks volumes when you’re consistently hurting. It takes an idiot to dramatise or ‘fake’ being ill but to fake being well, that takes a journey you can even convince yourself with eventually.
“You get to sit at home, be lazy and unproductive, laying in bed catching up on all your favourite TV shows and seeing friends and family when you please. What a great life!”
To put it simply: I have two words for people who speak so insensitively and it’s not thank you. You know what the reality of chronic illness is? Having a ton of plans and ideas you want to put into practice but being instantly knocked back by the intensity of your condition just as you started to inject that positivity. Driving yourself round the bend looking at four walls as you lay flopped out dosed up on medication and forceful fatigue. Being so drained you don’t even have the energy to switch the TV on, never mind have a marathon. Never even hearing a muffle from the ones who are supposed to care because you only get a visit if you’re home bound with a broken leg, right? You can’t even concentrate on a relaxation technique because you are that riddled with pain and mental haziness, so you really think a chronically ill person is going to welcome the chance of rest? No-oh. The polar opposite, in fact. We don’t even know the meaning of the word. I know I’d much rather be embracing the outdoors than cooped up indoors watching the world go by without the opportunity to seize. But go ahead, keep spouting your bullsh*t ideology with absolutely zero knowledge…
“I swear you use your illness as an excuse to avoid things you don’t want to do!”
Of course, you’ve hit the nail on the head! That’s exactly what we do; because we get a cheap thrill out of letting people down, arriving late, cancelling plans we were looking forward to, being made to feel at fault, having to neglect both yourself and the house you live in because you physically can’t build up the strength to tidy, clean or make an effort. Our health may prevent us from some normality but we still have the sanity intact. Do you really think we’d use our own illness as a justified reason to drop out of occurrences when we try so hard to rid of the link between who we are as people and who we are as a casualty? Think again.
“Maybe it’s just all in your head. Have you tried therapy?”
I’m sure there’s plenty of spoonies who are in agreement with me that when the dreaded 11 letter affirmation drops up in conversation, that’s when you’re just about at your wits end and ready to turn and walk straight out that door with no forewarning. No, I don’t mean ‘get well soon’, I mean ‘mindfulness’ – apparently the correct healing method and solution to every single ailment that certainly isn’t deriving purely from your mental state. Fair enough, I understand that being very low and stressed out isn’t going to be beneficial for your already daunting illness so the option is open for a chance to develop your happiness and coping strategies but that is not going to be the answer that frees you. I once attended a pain management session that made me worse upon leaving than it did entering because apparently if I’m thinking in detail about the impact of my pain, then that means I’m anticipating it so all I need to do is close my eyes, picture sunny beaches and the sound of waves and that will magically go away. Pffft. Fun fact: it won’t. This is the life we live, we’re not imagining it, it is not stemmed psychologically and you believing so is undermining us to a great extent.
“There must be something out there to help you, let me pinpoint what’s best for you amongst all these innovative new treatments despite my lack of medical advantages*”
*Okay so this may not be a direct quote but just a taster of my scoffed annoyance.
Trust us, when we say we’ve tried every route – we’ve tried every route. From the minute you are given your diagnosis to the desperation on discovering restoration that works, you’ll have travailed tirelessly with doctors and consultants; testing, trialling, discussing and considering with every brain cell left. We’re appreciative of hearing about new treatments that are on the horizon but please don’t tell us there’s plenty of options for us to take. If there was, we’d most likely be running around carelessly fulfilling our dreams, not wasting half of our life sat in a medical setting listening to the top 40 on repeat because apparently the staff are willing to listen to Capital FM from morning to evening (you know the woes).
People in general have a hard time understanding chronic illness and it’s easy to fall under the spell of beginning to believe those misconceptions as your self-assurance drops but remember; only you know yourself best, don’t allow ignorance to cause multiple hurt.
Have you ever been a victim of misconceptions? Let me know your experiences in the comments – fellow spoonies or not.