When Your Illness Makes Others See You as 'Flaky'

I’m sure I’m not the only one that has a number of relationships – be it with lecturers, current or past bosses, cast members, best friends, friends, boyfriends, girlfriends, husbands, wives, friends with benefits, etc., who sigh and groan if you dare to message or call them now.

In-person (if you still meet at all) they give you a small smile of understanding, but cannot conceal their annoyance at yet another thing you’ve cancelled with incredibly short notice, or because you’ve delivered way past the deadline. You may even look at your emails filled with numerous apologies and have gone from being “OK” with the change you’ve requested, to replying and reiterating your failure to produce what you committed to – but ending the email with “but OK.” I don’t know about you, but those “but OK” emails set me back the most. The emails that end with a line that is “understanding-ish” that you can’t complain or accuse of failing to truly “care” about the limits and extenuating circumstances your condition, or the fallout from your condition, creates.

Firstly, what do I mean when I write the fallout of chronic conditions? I mean the anxiety that your condition can instantaneously affect you with, sometimes rendering you housebound. I mean the exhaustion and daze that many medicines for chronic conditions cause. I mean the need to find someone to drop you at work or an event, but not having enough money to pay for a taxi, or having anyone available to drop you. To someone without a chronic condition, and perhaps even those who do have such conditions, this may sound like a cry for more understanding about “flakiness.”

“Flakiness” is a word I would happily have struck out of the dictionary and all the minds of people on this blooming planet.

…A bit strong A.G.?

Probably. But when you have a chronic condition, so many careless words are thrown at you. Words such as “flakiness” hurt. I know that there are already many articles on this site which helpfully draw attention to such words and how cruel they are.

No chronic condition manifests the same. Some people with such conditions manage and make every single commitment they make – exhaustion and pain none withstanding. To them I take off my hat because that stuff is hard. Like, really hard. However, for those of us who don’t, please don’t think we don’t try, don’t care or even worse – that we don’t want to! There are days where the only person I speak to is my mum. Don’t get me wrong, my mum is one of my best friends in the world, but it can get a bit overwhelming for both of us.

Recently I cancelled at incredibly last minute to perform in an amazing and incredibly insightful play.

I can hear and feel the judgement coming from some of you already.

“Why did you put yourself forward if you have a chronic condition?”

“Surely you could’ve still performed or cheered them on in-person?”

“Maybe just stop acting…”

Sigh.

A large part of me feels that all these thoughts are justifiable. I left them in a lurch and here I am writing a piece basically pleading for understanding.

Shameless, really.

…But is it?

OK, yes it is. I messed up. However, you know what really messed up? My body. My body tries its best every day and though I often wish its best was a little more like healthy people’s best, its best is still pretty freaking awesome and worthy of an internal pat on the back. As I write this, I’m living off of caffeine-free tea with almond milk because my irritable bowel syndrome is seriously acting up. I am too fatigued to lift my head up to properly type more than a few words a minute. My left knee feels like someone is shoving knives from the inside out. Last night I was too fatigued to lift my arms up to bring my duvet covers closer around me, which resulted in a freezing night sleep.

You might be thinking, “If you’re feeling so horrid, why did you volunteer in the first place?”

Honestly? I thought I’d be better now. I’m sure a lot of people with chronic illnesses are chuckling at that. I don’t mean to speak for anyone else, but from what I know, a lot of symptoms of chronic conditions go in waves. Some days are OK and some are absolutely horrid – it just depends on the person. I have been going through a particularly long and disruptive wave. But I thought I’d be out of it by now and able to perform in a play about issues close to my heart, with people who identify as women living their truths on stage for all to see and hear. That unfortunately has not been the case. I’ve instead missed a ton of rehearsals and I’ve sent a lot of “sorry” messages.

I cannot blame them and don’t. They didn’t see me limping around my house after struggling to get out of bed. They didn’t see my mum having to bring me food in bed for me to be able to take my medication, and then fall promptly asleep as a result of said medicine. They haven’t heard me crying out in agony from shooting pains all over my body. They haven’t heard me struggling to remember basic words like “remember” because of brain fog. Or dropping my phone a gazillion times because my wrists keep giving way. They haven’t seen…me.

This is my reality. Sometimes I think I should photograph or record these moments in my life, but at this present moment I’m just not comfortable revealing these moments of absolute vulnerability. To those who do, I salute you and hold you in the highest esteem for getting our experiences out into the public’s consciousness.

I accept responsibility for these ruined relationships. At times I should’ve been more proactive. More explicit about the state of my conditions. More vocal about my need for flexibility. But sometimes I can’t do or be more. My entire focus and energy is simply being spent on existing. Doing basic things like bathing and making something to eat is often beyond my capability on a specific day.

“Chronic conditions” is such a wide-ranging term. Yet, I want to experience and put myself forward for the same events and positions that a healthier person would. It’s a selfish request. I should know my limits by know. Due to the abruptness of many of the symptoms of my conditions, my energy levels fluctuates too much. I may feel fine in the morning – dancing around my living room and then by lunchtime I’m slowly making my way to my bed because I feel like I was suddenly beaten up invisible elves.

My story is not unique, nor is it representative of all chronic condition warriors. I still have to learn how to manage living happily and my version of actively in this world. I still have to learn how to self-mediate relationships so that even if they become disrupted by my condition or resulting fall-outs or lack of pro-activeness I can at least feel that I did my best engaging with this relationship and hold my head up high with said knowledge.

Getty Image by emrVectors