It’s safe to say that there’s a bit of a communication issue between normal people and spoonies (A.K.A chronic illness sufferers). It’s easy to feel like no-one understands you if you have a long-term health condition, almost as if you're speaking another language.
What I've come to realize, in my time being poorly, is that this misunderstanding usually originates from a lack of perspective. Being sick all the time dramatically changes your life in a way that is much more subtle than your immediate ailments. Things that seem minor to most people may be a mountain for you. On the other hand, your tolerance to certain elements of life becomes sky high comparably.
I’ve officially had my fill of sympathetic faces when I’m trying to crack a joke or confused looks when I freak out over nothing. Because of this, I’ve created this handy guide to help all fully-functioning healthy folk translate the inner meaning behind their sick friend's conversations.
Here are five handy examples!
1. "Today the doctor couldn't get any blood out of either arm, and I had to have seven injections” = “We’ve run out of milk."
If you knew what went down behind the closed doors of my doctors, then you would honestly never look at me in the same way again. I've had so many injections, tubes and appliances shoved in numerous orifices and brutal physical examinations; it's got to the point that I'm pretty confident that I'd be able to hold up under torture.
When I share anecdotes of my frustrating medical experiences, I don't want it to shock you. These things are my normality; slight annoyances that deserve a quick grumble before moving on. They're unfortunate and aggravating, but no more than coming home to no milk for your coffee or forgetting to put the trash out. Life will always have its challenges; mine are just somewhat different.
2. “My appointment has been moved to a specialist instead of my local doctors” = “I have to climb Mount Everest."
While some things that would seem horrific to you are routine for me, it is also largely true for the opposite. I have to plan each unit of my energy so intricately, that the slightest change in schedule is akin to moving mountains. Combine this with the extra distance involved in getting to far-off appointments, and you have a recipe for a complete nightmare.
There have been several occasions where I have found myself cycling across the city, unsure of when my limbs are going to give up on me. Stopping every so often when it feels like I'm going to pass out and having multiple mental breakdowns in the process. Adaptability is no longer my forté.
3. "I feel ok" = "I'm so ill."
I’m going to admit something I’m ashamed off. Occasionally, I get really annoyed at ‘healthy’ people for complaining about illness. Obviously, everyone's suffering is valid. However, when you spend your life in a constant state of unease, your barometer for illness changes drastically. It's got to the point where I very often don't even realize that I have a cold these days.
This is not a cry for pity or to hear how inspiring I am. It's merely a situation that needs to be accepted by all parties. If you look at my life with this knowledge, it's a lot easier to gauge what I am and aren't capable of, and we can avoid many, many misunderstandings!
4. “I’m just trying to understand my diagnosis” = “I’ve decided to prove string theory while simultaneously banging a hammer on my head."
I've vaguely mentioned this point before in my ‘Confessions of Chronic Illness' post – it's worth re-iterating. I have literally no idea what's going on with my body; neither do the doctors; neither do my counselors; nobody does. The medication that is supposed to help me can also have harmful long-term effects? Mental illness is a key factor but is it the cause or a symptom? Is it even possible to get completely better? No-one knows.
Enter the hammer. So you’re basically left to start your own Google-based medical degree; produce first-hand studies of the value of alternative therapies; tune into your body’s physical signals and ponder the implications of the human condition. All of this occurring, of course, while you feel so cripplingly horrible that you can barely string two thoughts together. Being chronically ill is basically a full-time job: stressful, tiring and, occasionally, incredibly rewarding.
5. "I'm not sleeping well recently" = "the first rule of fight club is not to talk about fight club."
This point makes me laugh every time I read it; I’m sure there’s a few out there who wholeheartedly empathize. If you haven't seen or read Fight Club, it was a book by Chuck Palahniuk that was later adapted into a film.
The general premise involves a chronic insomniac, who hallucinates a badass alter ego and ends up starting a violent revolution and blowing up the whole city. Dramatic, I know.
For many, myself included back in the day, insomnia would have equated to taking longer than usual to fall asleep or waking up periodically in the night. Unfortunately, that’s the basic routine now. For me to actually acknowledge my sleep is bad occurs in situations such as this morning:
I hadn't gotten to sleep till about 2 am. I'd woken up a few times and dozed off again. At 4 am I was wide awake, my Fibromyalgia and stomach problems were kicking butt, and I was ready to throw myself off something very tall. After as assortment of medication –anti-anxiety, painkillers, sleeping tablets – I was still staring at the ceiling. Even after kicking my partner out of bed so I had more room, God bless his tolerance, sleep was still not in sight.
This night occurred after a week of similar experiences and, it's safe to safe, I'd reached Fight Club crazy. I returned to reality at about midday, unsure if I'd slept and unable to separate the many visions in my head between dreams, hallucinations, and reality. I didn't blow up a city, but I had managed to post an article on my website unknowingly.
In short: if I ever tell you I’m not sleeping properly, I’d advise you properly vet all ideas and opinions before allowing me to make any important decisions!
What about you? Do you have any common phrases that you need to translate for your healthy friends? Or are you a supporter still struggling to get to grips with the basics of spoonie talk? Let a comment below and share your story!