Disability and losing the right to be human

So I am disabled. It takes a lot to say that but at the end of the day I am. What started two years ago as debilitating fatigue has developed into fatigue plus two diagnosed conditions and a host of random symptoms.

I have to eat every three hours because of Reactive Hypoglycaemia but my stomach burns constantly and I haven’t felt hungry or not bloated since I was diagnosed. I have ended up in bed with sprained knees from swimming which meant walking was painful for over a year. I got a sprained ankle from just walking which has meant I haven’t slept through the night in months thanks to the pain. The culprit this time was Ehlers Danlos syndrome. That isn’t to mention I get constantly ill, I am constantly fatigued (fatigue and tiredness are so different it is impossible to explain) and as much as I dream of working full time in an exciting career – I am simply stuck.

But this article isn’t a run down of everything that is wrong with me, it is about the problem with society when it comes to working with disabled people. It also isn’t a "look at me I’m disabled", because I still have it so much better than millions of people around the world. I got 22 years worth of a healthy life and I have the hope that one day I will get there again. I know I am so lucky and thank God for that (not as much as I should). 

But it is about the fact that the moment you get long-term health conditions or disabilities, it seems you lose the right to be human. Recently I had to give more information that I was really comfortable with to get the adjustments I needed and they are allowed to ask for this and I even understand why they have to ask for this - proof. But would this be the same for a healthy person? No if it didn’t interfere they wouldn’t have to lay out their body on a platter for the taking.

At the end of the day I felt violated and maybe that was me being sensitive, but that was how I felt. I could understand economically why I had to. I understood that if we are in a country where people might fake illness why I had to. But I have never faked an illness or exaggerated an illness in my life, and it made me feel bad. I am just trying to survive.

Society has to change. Just because someone is disabled or struggling with their health, does not take away their privacy. I like my privacy. Granted I can be super open about telling people all about my love life or my stupid mistakes or the funniest thing I’ve done, but at the end of the day that is because I don’t want people digging and delving below the surface. It took me five years to share with my friends some of the worst things that have ever happened to me, three years to tell my own Mother. I hadn’t shared so many dark days that I had because I wanted to be private. Instead I would fill that void with funny stories. None of these stories actually matter and none of them define me, but that’s better than letting someone in.

The thing is that since having to actually ask for help and adjustments, I have lost that right. Suddenly it seems I have to tell people all about my problems. Being diagnosed with this many issues half way through what was meant to be the best year of my life is probably the worst thing to happen to me. I can tell myself it’s a blessing in a million different ways and I have. It’s a blessing to spend time with my family, it’s a blessing to spend time with my cat, it’s a blessing to slow down and smell the roses, it’s a blessing as once I am better I will be able to help other people, it’s a blessing because it helps me understand human fragility, it’s a blessing as I have had time to identify my dreams etc etc etc. But at the end of the day as much as I can try to frame this in a positive light, it is stopping me from living and I am doing everything in my power to get the fitness and all clear to go to Peru like I originally dreamed: to sleep in a hammock in the Amazon and to see Machu Picchu at sunrise. 

I am lucky and with the correct care and management some of those dreams might come true. I know I am so lucky compared to so many disabled people in this world, but please can we just bare a thought that all people deserve to be human.

It doesn’t matter if someone looks perfectly healthy so you decide to question them on how they actually feel and look, like they need to defend sharing their deepest feelings with you. It doesn’t matter if someone doesn’t look healthy and looks ill so you decide you can treat them differently like they need to defend their right to be human.

People ask for help and when people ask, give it, because their life is a hell lot more difficult right now. But that same person deserves to go away and not have to explain every single detail of their personal condition to you. It is kind to help, it is good to help, it is human to help – but that is no excuse to violate that person, because that is what it is – violation, and that isn’t something you should ever do to a human, ever.

That violation comes in many forms, some even dictated by our government. 

I have come to realise that I will have to learn to deal with this fact of life, but that doesn't mean it is OK. 

So I guess it is a blessing that I have come to see this, as I pray that I will never, ever, make someone feel violated because they are asking for help. That just doesn't make sense to me.