The Barrier To Happiness:An Invisible Illness

Being happy isn’t always a matter of having the nicest house, the job that pays the most money or having that family. For some people it is those things but it’s not for everyone. I’m not sure what it is for me yet, we all have those dreams in school and college, that life plan and no matter how much people say “everyone reaches milestones at their own time” it doesn’t change the fact there is still society’s expectation of what you should do with your life, what you should have by the time your 25 or at least the idea of a “successful” life or career. It places alot of unrealistic expectations on young people and for me I find that it places expectations on those of us who had their dream screwed up by their health.

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You see, I did everything in my educational life that would be geared towards going to drama school, I danced, sang, acted and continued to throughout and after my chemotherapy. Unfortunately when it came time to think about it, to think about what I wanted to do after college, University or Drama School seemed so far away for me. I had days where I could barely stand on my own, how on earth would I cope in brand new surroundings, I’d be the girl that didn’t go on the nights out or get involved in freshers week because I simply wouldn’t be able to physically. It would exhaust me. So as much as I’ve been so lucky to hold down full time jobs for the most part, my bone condition has never gone away and it won’t. With it comes fatigue and often the feeling that I’m not good enough to reach what I want.

I don’t let on very often but I do struggle, to hold down a job or keep plans, it’s a fight every single day to get up and out of bed and it’s not because I don’t want to. It’s because I’m in constant pain or I can sleep all night and still be tired, my joints will still feel like they haven’t been rested. With the condition being an “invisible” illness it means I find myself trying to live up to the outside world’s view that there’s nothing wrong and often feel guilty if I can’t do that. It’s become a part of normal life for me and I make adjustments when I can, like waking up forty five minutes before I have to get up because I need that time to be able to bend my knees or stand. On really high pain days it doesn’t make for an easy time, take today for example I had a fall and banged my hip so had to take the day off, I’ll be off tomorrow too. When most people have a simple fall they can stand and just get on with it, me…well, it only increases the pain and stiffness in my joints.

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Because of this I did for a long time think to myself, “Just be happy you’re going to work, you are able to meet with friends and make plans,” and I am, I’m so grateful for that but that kind of mindset also means I don’t ever reach for anything more, for what maybe I actually want to be doing. I hadn’t thought about it until recently but I think alot of the time we are own worst enemy, it takes alot to have a self – belief that you can do anything you want to when the one thing you’d love to do is the one thing that will guarantee you a bed in A&E, but does that mean I should settle for less?

I used to think so, I used to think I should just be grateful and that would make me happy, it doesn’t. When I look back at all the moments that made me truly happy, it was when I pushed those limits on what I thought was possible, it was when I abseiled down a building, even though I had tears streaming down my cheeks and had convinced myself I couldn’t do it, it was when I sailed on a boat for a week after initially having no idea how to even step onto it. I can count the best decisions in my life on one hand, sailing with the EMC Trust, joining a directing course, taking a screenwriting course, joining a choir and becoming a volunteer with CLIC Sargent being in that list. What do all of those things have in common? They pushed the limits on what I was scared of, I was scared that I couldn’t get my legs to work long enough to get around on a boat, I was scared that I wouldn’t have the energy for the directing course as well as work and I was scared I wouldn’t ever be good enough to write a script. I was wrong every time.

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Fear is a powerful thing, some fear is irrational, sometimes people are scared of the unknown. For me, my biggest fears are founded in very real possibilities and scenarios. Pushing myself too much and ending up worsening my joints at a faster pace, leaving it too late to make a decision about children and not having an option, yes I can hear a hundred times that I have “loads of time” but when your doctor’s put a time limit on something, it’s on your mind immediately. But recently I realised my biggest fear is reaching the point of having my hips replaced or wanting to start a family and never having gone for my goals or dreams, I don’t want to regret.

That’s what’s been on my mind recently, I had a very long chat with my late effects nurse and it hit home, it brought me right back to that feeling I had when I knew I had cancer. The what if’s…I don’t want any more what if’s, I don’t want to look back and think yes, I survived cancer, I pushed through my joint condition and then I settled because it was expected and stable. I don’t want that.

I recorded a short video a while ago…about where I wanted to be in five years, my answer? I wanted to be happy, truly happy, I want to be able to say that I faced my fears and it was worth it, because whether reaching for something I want works out or not at least I can say I tried. I’m now realising I’ve overcome too much to simply settle for something that isn’t me or that I don’t want. Being around people that have the same mindset helps, the people that encourage and support your dreams no matter how big they are, those are the people I’ve found now, they understand that I won’t always be a hundred percent energetic and they get that I can’t always do everything I want to. They’re the people that remind me what I’m doing is enough as long as it makes me happy and I’ve got nothing to feel guilty or apologise for if I have to take some time out. They’re the people that inspire me, that I’m grateful to have around and that believe in me so much it makes me believe in myself.

Having a disability inevitably makes anyone feel like they’re not quite enough at times, even the most positive have their moments. My moments include crying about everything I could have done and want to do, they include beating myself up for taking the day off work, but now they’re the moments I’m gunna remind myself of everything I can still do even if I have to find my own way to do it and the moments I’m going to be proud that everyday, even if all I do that day is standing up and walking around the house, I win that fight with my joints and my body.

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Because even with a condition that impacts my work, social life, sleep and energy levels I still have those things I’m passionate about, those things that hold my attention, that make me feel like nothing is impossible and those things I want to do because I know it’s going to push my boundaries.

I know I can be happy in five or ten years time and I’m determined to find that.

Next stop: Anywhere that’s up.

Fay x

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