Drop the Facade

Facade : (n) A deceptive outwards appearance. 

I am quite sure a chronically ill individual could be the definition of this word. Responsible for putting up a facade constantly so as not to scare off others with the reality of your life. I am pretty sure the majority of human beings will do this at some point in their lives, and anyone with constant struggles, even more often.

I know I am guilty of this, so much of the time. The struggle to be real and open about the everyday pain and exhaustion you're going through is waring and tiring. It is so much easier to plaster a smile on your face and tell everyone you 'OK'. Those two letters have gotten me out of multiple conversations that I didn't want to be in. How much simpler is it to not tell the 'story' all over again, to not see the looks of pity and/or sympathy on another's face that makes you squirm on the spot.

So today I want to break down the facade, to write a few lines about the truth, reality, joys, struggles, pain and fights that I face and I know thousands of others face daily in varying degrees of severity. It's always easy to find someone who struggles more than you, or someone whose struggles are less than your own, making those comparisons can be dangerous though, because which ever one you are prone to comparing yourself to, you are either diminishing yourself or another individual in the process.

Firstly, the 'story', we all have it. The long complicated narrative that explains how we went from feeling symptoms that were unexplainable, to undergoing a thousand tests, to a number of incorrect diagnoses and eventually landing up where we are. Often meeting someone who I don't know who asks me all about my health because they have heard about it on the grapevine can be the most difficult as I have to explain this long saga of my life to them knowing I may never see them again. So, my advice to anyone out there is : wait until you get to know a person, it's personal, and it's a painful experience for them. Decide weather you actually want to be invested before making them pour out a part of themselves to you. It may seem simple and like a medical journal, but to us, its a huge part of who we are, why we are where we are, and defines a lot of our futures for us.

Another important point to share is how this all affects the mundane. Daily tasks, simple activities are no longer just that. I've had days when going to the shop feels like climbing a mountain, where driving somewhere is exhausting to the point of needing to sleep for 2 hours afterwards. The simple task of washing dishes leaves a deep, throbbing, burning pain in your lower back, carrying groceries gives you a headache, and despite the fact that you slept ten hours the night before, 8:00pm feels like midnight.  And this is on a good day.

Sometimes I feel like there needs to be a book written called "befriend me and get my twin" basically how to be friends with a chronically ill individual. Me and him (yes my illness is a him) are a package deal. You get me you get him. Some days he and I get along and other days we are in a fight. Somedays he behaves himself and I feel more normal an then someday he rears his ugly head and sets me down. I would say we spend 50% of the time fighting. He wants rest, sleep and a whole lot of downtime, I want to get A's, work and run around like a headless chicken. This is where he and I have to reach a compromise, neither of us are going to get it all our own way, and believe me, it's no fun sharing the control. So we prioritise, this may include pros and cons lists, bullet journaling or simply a discussion out loud. This friends, is the reason I may be a bad communicator at times, the reason I don't go out at night for weeks on end, the reason I seem like an antisocial hermit. Somethings gotta go, and sometimes I have to prioritise him, Mr. RA. I don't like to let him win which can often be the problem, I ignore him and try to go on as normal and then I lose and coming back from that is a slow process requiring a lot of patience (and sleep).

Here is when dropping the facade is the hardest, because being brutally honest with yourself and others about how you really are is not fun. It feels lame and attention seeking and so often the worse you feel the more you don't want to say. This friends is when we need you most, we may be too proud to ask, or too busy acting as if we are fine, but this is when it's okay to push your love and care on us.

To others struggling with chronic illness, this is where you need to allow those people to care for you, let them in, be honest with them so they can know how best to be there for you. it's not weakness, it doesn't make you lesser and this doesn't mean the illness is winning. It means you're dealing within on your own terms.

Chronic illness being what it is, it's not going anywhere anytime soon, so the sooner we learn to compromise with it, the better. Even when doing everything 'right' and 'by the book' there are going to be days when it still defeats you, thats the way it works. It's a relationship, a battle and a lifestyle all in one.

So a note to friends, families and partners of individuals with chronic illness, it's never as simple as we make it seem. The pain is always worse than we express. We can never have enough sleep, and I mean never. Conversation may exhaust us and we may struggle to make it to any events for weeks on end.

Some days we have to say 'I'm Ok" because the truth is too hard. Please don't give up on us, we are trying our best and some days just need a little more grace and love.