I have come to realise just how much lack of exposure to the difficult and negative affects and implications that having disabilities and chronic health conditions there is.
I suffered from mental health issues from when I was a child, and the same thing was true of that then – but now I have become accustomed to seeing more and more exposure to realised of living with difficult psychological conditions. I have become accustomed to conventional and social media focusing on these things – from magazines, to newspapers, Twitter, and TV shows (drama and documentary), there’s a lot out there trying hard to de-stigmatise mental health, cover its effects on sufferers and close relations, to tackle how it’s dealt with, and with plenty of “hints and tips” on how to cope with it, whichever side you’re on.
But what of long-term or permanent physical help? There is nothing much around about how to deal with that. Mental health issues arise because it’s not dealt with, then the mental health issues – a secondary complication – has to also be dealt with too. If there was more out there about how to deal with physical restrictions or impairment, we wouldn’t need to bother the mental health teams so much, because we wouldn’t need them. We’d be getting on better on our own, without spiralling into despair caused by the emotional turmoil of dealing with a long-term, chronic disabling or restrictive condition.
I just watched an episode of the TV show NCIS: LA. One of the characters has been left with spinal cord complications and nerve damage, causing a mix of paralysis and loss of sensation. Her reaction is not one of stoicism and eternal optimism, or inspired determination to get better. She has a reaction far more realistic – she is pissed. She’s irritated, hurting, angry, resentful, and takes it out on her boyfriend. This representation – which I think is what usually happens, and happens with me still – doesn’t happen very often. In fact, this entire scenario is quite often overlooked, ignored, or avoided all together. If illness or disability is depicted, it’s never in a negative, restful, or angry light. I do not think I can recall another realistic depiction of negative emotions to such a situation offhand. Chronic illness is almost never depicted, and if it’s a disability, it’s usually depicted by an able-bodied person in a wheelchair who’s been paralysed in a generic accident (casting choices like Daryl “Chill” Mitchell of NCIS: New Orleans cast are a rare exception). There’s not many people out there depicted with
The thing is, there’s nothing really to be scared of when it comes to being faced with long-term illness or restrictive conditions. And to praise them grately, a whole host of celebrities have been very open about having lifelong chronic conditions and dealing with them, like Michael J Fox (diagnosed with Parkinson’s at just 29), Jack Osborne (diagnosed with MS at only 26).
So… where is it on TV, in magazines, in the general media? Where is the “How To” guide to other people who are diagnosed with complicated conditions or illnesses? Where is the realistic confusion, anger and resentment on TV in relation to finding yourself diagnosed with something that is going to change your life? Yes, there are diseases like cancer or HIV out there, but what about debilitating conditions like Motor Neuron Disease (like Stephen Hawkins has, diagnosed when he was just 21 years old), MS, ME, Fibromyalgia, brain injury, cerebral palsy, cystic fibrosis, spina biffida, stroke… there are endless lists of ones. All ones that real people deal with every single day. Yet, few media outlets dare frighten the general public who are “normal” with such things. Heaven forbid. Therefore, there is very little out there to give us some indication that we are not, in fact, all alone when it comes to dealing with these things, nor any advice and guidance on how to manage dealing with it at all.
I’m not even quite sure why it’s so terrible or taboo. In this day an age we can talk about and depict the most illicit debauchery, of the raunchiest of sex lives… but not about how long-term, chronic and restrictive conditions affect us? Why? How terrible is it? I have to live with it, as do countless others… but the the other “normal” people don’t. It’s real, it’s true, and out there too many people have to deal with it in real life. Why is it not possible for it to be depicted so that not only others can be exposed to the realism of it, but we can see ourselves someone else going through it and empathise with them. We should all care about each other – isn’t that what humanity is supposed to be about?
Stephen Hawking has MND/ALS and is a living miracle of his survival of this condition – yet what we care about is that his brain is bigger than the entire universe (hence clearly why he’s the only one who understands it!) and he’s funny. And apparently drives Jaguars ( ;-P ). Michael J Fox is known as being Marty McFly with a hoverboard, not for being someone with Parkinson’s. And so on. We are all people with accomplishments and lives, who just also happen to have a chronic or restrictive condition. But that condition is always going to be hard to deal with, and it would be nice to be represented, to be seen… acknowledged.
In my opinion, I believe this is why it is easy for so many to see us as “lazy”. That we can just “push through” it, like it’s just the bloody flue and cup of Lemsip and a banana is all we need to do the trick and get us up an running again. Nowhere out there does it show how hard it is to live with a disability or chronic illness. We just see the luckiest of us who can manage their conditions, or have an earlier stage of it. Nowhere does it show us taking cocktails of pills, or crying with pain and frustration. It doesn’t show people isolated by lack of mobility, or struggling to get in and out cars or bathrooms. It doesn’t show people being rejected by medical professionals, by employers or other people.
We are invisible.
It’s 2017… No one should be invisible.
To Be The Unseen…
I dearly wish there was something out there I could read or watch that showed how to deal with not knowing what the hell is wrong with you, whilst medical practitioners ignore you. I’d like to know how to deal with insanely intense agony every second of my life. I would love one of those little “Tip” boxes that appear in magazine articles about how you cope with not being able to move, and being trapped by your own body. I’d like to know how you manage when everything you loved has been taken away from you.
I’d like to see someone reflect my own agonies, inside and out. In that NCIS: LA episode, I saw a little of – because she reacted in just the same way I do. When I realised that, it occurred to be that I had no seen in previously – not in the last 3 years and 3 months I have endured this have I seen true representatives in the mainstream media. Nowhere can others see what it is really like to live like this, when you’re struggling and a victim of your own body and circumstance. Nowhere can anyone find information to obtain some empathy and insight regarding what people with disabling or restrictive conditions go through.
Effectively, this is also how the government of this country still manages to make us the “bad guys”, scamming the system – because no one understands what it’s really like.
So far I have, over the years, seen a great change in depictions of certain things in the mainstream media that I have suffered with, including focusing on cancer (which family members had), depression and mental health issues, and even Autism. No longer are these three things taboo or frightening words to the world. These are not the things I am ashamed of – and I’m quite proud of my AS and the abilities it affords me.
But this… This – whatever it really is in the end, and frankly I would prefer Fibromyalgia above all else possible – is what I am ashamed of. And I don’t know why I should be. I should not feel bad, or guilty, or apologetic, or ashamed. Yet I do.
Perhaps it’s because it doesn’t really have a name yet – when you haven’t tested for anything, you cannot call it Fibromyalgia. It’s only probably that because everything else has been ruled out and is impossible. Nothing has been ruled in or out for me yet, so I don’t know. And what’s worse is that I don’t know if it’s something else, either. A couple of pokes and the same blood test repeated 3 or 4 times is not diagnostics. It’s just a waste of resources.
The bottom line is, I just want to be me. That could be me with everything I used to have, or me being restricted and not really able to walk properly and in pain. But I’d like to know what being me is, and a part of me is this… thing. So I would just like to know what this thing is, so I know every part of what I am. It makes things easier – the harshest truth is better than the softest lie because it’s the truth. And that’s all I want here.
To go with it, I’d also like to see that we are no longer invisible. That we are not shameful or taboo. We’re just here, we are a fact, and we just want to be a part of society – not ostracised (both in our day-to-day life and in media/fiction). You don’t need to feel guilty we’re here. We shouldn’t have to feel guilty we’re as we are. So why is this going on?
You’ll probably happily talk to me about relationships, work or sex, but not about this condition or illness? Why? It really probably should be the other way around… I know what I’d rather talk about with someone…! I would rather educate someone about my illness than have them scared about it or too “embarrassed” to ask. Surely it cannot be more embarrassing than talking about sex or problems at work? It’s not even an embarrassing thing – and I shouldn’t have to feel like it is, either.
I am not so terrible for having some condition. I am not so changed because I have it. But what can change is perception. It’s isolating and lonely. Openly talking about things, not being afraid, not being embarrassed or guilty or ashamed, not openly avoiding it, not allowing it to be the “elephant in the room”, or just avoiding me altogether.. that’s what makes things wrong. It would be so much easier just to have understanding, patience, support, and openness about it, then just leaving it be and getting on with everything else as much as possible.
Share and support. Humanity and empathy. Acceptance and care.
It’s should be easy… Right?