On Being 'Differently Abled'...

I started writing this blog post way back in July, whilst sitting on a bed in Spain at 6am. I’ve only recently managed to finish it. Why was I writing at 6am, you ask? Because I couldn’t sleep. Why couldn’t I sleep?

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What is a ‘disability’ though, really?

                It’s only lately that I’ve felt strong enough to come out and openly talk about something that changed my life nearly four years ago – though it has actually had an impact on my life for longer – more on that later.

                In February 2014 I was diagnosed with a chronic muscular pain condition called fibromyalgia. It took a long time for the specialists to finally ascertain what I had, but the reality is that I’d had symptoms of this condition for many years.

                I’m not writing this post for sympathy. I would rather people didn’t know I had fibro to be honest, but I’ve realised that there are too many of us suffering in silence whilst pretending to be like everyone else or pretending that being ‘differently abled’ isn’t really as hard as it actually is… So I’m writing this for the other people out there that are ‘differently abled’. And maybe for others too, to understand what this is like.

                Why am I saying “differently abled”? Because that’s what I am. Even before I was diagnosed with fibro I hated that word, ‘disabled’. Dis-abled. UNable to do things. It suggests that people with conditions that limit them physically or mentally are incapable and incompetent. I beg to differ, and I have always begged to differ. 

“DIFFERENTLY” ABLED… NOT DIS-ABLED!

                I feel the Paralympics and other para-sport events remind the world every now and again what people that suffer from physical or intellectual impairments are truly capable of if they are allowed to shine. I speak as someone that has loved, followed and trained in athletics for several years: I have more respect for so-called “disabled” athletes than I do for able-bodied stars, though I do love my Usain Bolts, Mo Farahs and Jess Ennis-Hills. The determination and steadfastness that is required to compete in a sport like athletics is crazy. It gets even crazier when you want to be the very best and stay at the top. And then it becomes crazier still if you want to do the two former in addition to having a seriously debilitating condition which makes things x times more difficult.

                It’s crazy hard, but it’s possible. It’s just possible in a different way to what it is if your body and your brain work as they’re supposed to. If you have some type of handicap, you are not DISabled from being eligible, you are simply DIFFERENTLY equipped for the task. Equipped with less, sure, but still equipped nevertheless. You just have to do things in a different way.

                Personally I prefer the word that people used to use to describe people with ‘disabilities’: ‘handicapped’. It denoted that such individuals were limited in their abilities to do certain things, but did not rule out the possibility of them doing these activities.

                I’ve long been an advocate of people with ‘disabilities’. Side note: I do hate using that word, but until another word becomes available in the English dictionary I guess I’ll just have to use it! Based on that conclusion, I’ll stop putting it inverted commas from here on out – but that doesn’t mean I agree with the term! Siding with people that fall into that bracket just seems like the perfectly obvious thing to do as a human being! I believe people only become discriminatory towards people with disabilities when they begin to see them as less than people – and there’s no doubt in my mind that the language used to describe them plays a part in giving shape to this reprehensible mindset that some people seem to have.

                As a linguist it’s no surprise that I see the language we use as very significant in shaping our thought process, but really if you think about it, it does make sense. Think back to the days of outright and very nasty racism (I’d like to think things have improved, but we all know racism is alive and well – even if it is generally not as in-your-face as it used to be…) when people would regularly refer to black people as “monkeys” and “baboons”. Of course it helped justify racists’ treatment of them: if these human beings were represented in people’s minds as mere animals with no intellectual capacity, it became easier to rationalise treating them with no dignity – though, let’s be honest, in a lot of countries black people were treated A LOT worse than dogs. The same goes for this: ableist people (that’s the word we use to describe people who are discriminatory towards “disabled” people) often use: ‘You can’t do anything, you’d be better off dead’ as their rationale for scorning people with disabilities and denying them time and time again their basic human rights.

                You don’t need to look very far to see how badly disabled people are generally treated in daily life. Watch a documentary on someone with a life-threatening or life-changing condition which makes them visibly different to others and you don’t have to wait long before the sufferer talks about how they are often stared at, pointed at and maybe even spat at in public. You can read stories of how people have been denied access to toilets and so many other services simply on the basis that they look different. You see how people will assume they can’t do a lot of things without even asking them first.

 My Case

                That isn’t me.

                Fibromyalgia, the condition I have, isn’t a visible condition. You wouldn’t know I had it unless I told you. In fact, until not so long ago only a handful of my friends knew I had it. There are benefits and downsides to having a condition which is invisible. The benefit is I can generally pass as “being like everyone else”, and the downside is “I appear to be like everyone else”. Do you see, it’s a double-edged sword. People not knowing about my condition means I don’t have to face frequent and outright discrimination in public, which I no doubt would if I were in a wheelchair. It also means that when I go to an interview, no-one will assume that I’ll be unable to carry out my work and decline to give me a job as a result – because they simply won’t guess that there’s anything wrong with me.

                But it does mean that when the metro is full I have to stand, like everyone else, until a seat becomes available, because no-one will know that my feet hurt from standing. It also means that no-one will give up their seat for me in the way they would move to make space for someone in a wheelchair (as most decent people would).  I remember once when we were on the bus in Marseille and some old people came in. My family and I all had seats, but a couple of these men said that my brothers should get up because they were young and could stand. From looking at me, you might quite reasonably assume that I am young, fit and healthy and so should quite rightly stand and give my seat to someone older if the occasion arose. On this occasion my brothers got up and we found some seats elsewhere, at the back of the bus, but I do remember thinking on that day, what if that had been me? What if one day an OAP asks me to get up, or expects me to get up so they can sit down? I always move when I can, to sit elsewhere, because I respect the older generation and I like to make things easier for people whenever possible. But if there are no seats free and I know I will have to stand on my feet for another 20 minutes if I give my seat to this hypothetical individual (because this is all hypothetically speaking), would I be able to do that?

                OK, let me explain a little about fibromyalgia is and what it does to you.

                I’ve been having symptoms of fibro since I was nine in fact, but I only got diagnosed with it when I was eighteen. The symptoms I experienced for nine years were sharp, “shock” pains. They would run through my body at entirely unexpected times and they were – and ARE – excruciating. They were mostly intermittent, meaning I would get maybe one here and then another there over the course of a day – but sometimes I might have a series of them for up to half an hour, running through either one block of my body or just all over. They were – and ARE – horrible, and though I went to the GP on a few occasions as a child to get them checked out, the doctors simply didn’t understand what was going on. Eventually I just came to accept that I was going to have to live with this strange and bizarre pain that would shoot through my body and make me twitch and sometimes scream and wince in pain. They were the worst at school: you can’t just scream aloud in class, can you? And nobody could see what I could feel, so I would try and hide it. Sometimes people noticed, like when my leg suddenly moved as if from a spasm when I was sitting down. But most of the time I could cover it. I would just close my eyes extremely tightly together and pray for the pain to go away because I knew I couldn’t scream. People would think I was crazy.

                It was only at home that “my secret was known”, if you like. If I screamed I could explain it away the moment after by saying “I just had a shock”.

                We tried everything, trying to change my diet so that I would have more Vitamin D, taking supplements, drinking more water, nothing helped. The shocks have been part of my life for over a decade. I remember one thing that frustrated me was how everyone seemed to think they had the answer without having a clue. I recall one girl at school telling me with certainty that the pains I was experiencing were period pains, no matter how much I told her the contrary.

                That’s another thing: people that suffer from fibromyalgia frequently have horrible period pains. I know I do. It makes sense that sufferers of fibro tend to have really bad period pains, really. Fibro is a muscular condition that affects every muscle in the body, and sufferers often fall victim to other related medical conditions. It was a couple of months into starting my degree at Oxford that I started to experience its full-blown effects. (As a side note: I don’t think it’s a coincidence that the intensifying of my symptoms occurred a matter of weeks into me starting at Oxford. You can read my series “Reflections on Oxford” series here.)

Living with Fibromyalgia

                It seems fibromyalgia is most common with women between ages 20-30, but it does affect men and those in other age groups too. Singer Lady Gaga and actor Morgan Freeman have both publicly come out and talked about living with the condition. I have, since I was diagnosed, met quite a few people who suffer from it.

                Fibromyalgia is a muscular disorder that leaves you in constant pain. Yes, I do mean that. I’ve spoken to quite a few friends who can’t understand how I can be in constant pain and still function. The pain is everywhere, but especially in my forearms, lower legs, and hands. On bad days (days when I have a flare-up and the symptoms become inflamed), the pain gets probably about five times worse than usual. This means my head is in awful pain, my back (gosh, everywhere!)… On those days I can barely walk or even stand. And if I manage to do either you can tell there’s something up with me.

                The intense, throbbing pain is especially worse when I’m in contact with anything. Which is, all the time, of course, as I can’t just hold myself in the air! So sitting down, standing up, lying down, kneeling… They’re all painful.

                Fatigue is also a major symptom of fibromyalgia. That means I’m tired all the time. If I don’t get enough sleep, I’m likely to have a flare-up the next day, which will affect my ability to achieve what I want to in a given day. Funny thing though, is, although I’m always tired, sleep disturbance is another major thing you have to deal with when you have fibromyalgia! So often I wake up in the middle of the night and can’t sleep, even though I’m SUPER tired!! It’s very annoying.

                Some people use medication to cope with fibromyalgia. I don’t, because nothing has ever worked for me.  The strong medication I’ve been prescribed has either had no effect, or has made me feel super sleepy! (Not helpful!)

                Not much is known about fibromyalgia. Even though I was treated (given a personal physiotherapist and more) at one of the best orthopaedic clinics in the country, the best explanation I could get for why my body behaves this way is that I process pain in a different way, and in some people the pain receptors in the brain are more sensitive than in others. Thanks. (If any of my medic friends wants to do a thesis looking into possible causes of and remedies for fibromyalgia, be my guest!)

                I’ve become a lot better about telling people about my pain and being real about my limitations. When I first got diagnosed, I hated the lack of control I had and found it really hard to accept the limitations that this label and condition confined me too. Now I’ve realised that actually, not accepting this only makes things worse. It pushes my body into overdrive, and it’s not fair to not inform people that I work with that there are certain things that I just can’t do.

                Here are some examples of things that I find annoying and frankly, embarrassing – that fibromyalgia has done to change me and what I can do. Something as simple as opening a jar or a bottle is actually extremely painful. The pain is really bad in my hands, so whenever I have to clench my hands, I’m putting myself into extreme pain. (Or as the case may be, sometimes other people unintentionally put me into a lot of pain. A very firm handshake, for example, leaves my hand burning for the next two minutes.) That doesn’t mean I never open a bottle or clench my fist around a doorknob, but it does make those things harder. Sometimes I do ask someone else to do something like a new jar for me, because it’s just too painful. Especially on a day I’m having a flare-up. I love how people don’t berate me for asking their help with those things, but simply help with no qualms.

                Even until very recently, I didn’t tell members of my own family about the gravity of the condition I have, because I didn’t want to admit to how weak that could sometimes make me. I’m starting to be more honest about the fibromyalgia, and I think the transparency is only helping me.

                That said, I don’t tell everyone I meet that I have fibro. I like to be “like everyone else” sometimes, you know? I don’t feel everyone I spend a little time with needs to know what I have. The lifestyle that I currently lead is making that a bit difficult though: I’m touring Europe with a Christian drama company and we’re constantly on the move. As much as I’m enjoying it, packing up so often and spending extended periods of time with people can be quite tiring, and though I just usually say “I’m feeling tired” by way of an excuse to get some rest, that doesn’t quite sum up what it feels like for your whole head to be pounding and your legs to be screaming out and your body saying “Sleep! I need sleep!”

ABLE

                I wanted to write this post to make others that suffer in silence or feel inadequate because they have some sort of physical limitation, feel that they are not alone, and be reminded of their worth.  Also, I guess I wanted people to become more aware of fibromyalgia and to start to question our discourse on disability.

                Some people would call fibromyalgia a disability. I guess technically it could be defined as such, but I don’t like to put myself in that box, because as I’ve already said, I don’t like the word “disabled”. I also don’t think I can use language that sees me as having as many limitations as someone that is paralysed and in a wheelchair etc… I definitely have limitations and I guess the condition I have does influence my quality of life, but there are still lots of things that I am able to do that someone in a wheelchair cannot.

                That said, someone in a wheelchair can still have great quality of life – ask them! Life is what you make it, and I have decided that I’m not going to let fibromyalgia define me. I do like to show it who’s boss as often as I possibly can.

                I finished a degree, am now touring across Europe with a Christian drama company, have lived in four different countries, still pursue all my interests… Including athletics! Experts actually do recommend that those living with fibromyalgia do regular exercise to relieve muscle tension. It’s a double-edged sword though, because sometimes my body is too tired and I’m in too much pain to do exercise! Of course everything hurts, but if I simply thought to myself, “I’m in pain, I can’t do anything”, I WOULD LITERALLY NEVER DO ANYTHING. Welcome to being in pain all the time.

                However, over-exertion and stress do make fibromyalgia worse, so I have learnt to “pace” myself. That means when I know I need to stop, I have to be honest with myself and everyone around me and STOP.

                As a Christian I do believe in healing, but there’s no doubt that fibromyalgia has been a tough pill for me to swallow, and there are times when I’ve lost my ability to have faith that this condition will ever be a thing of the past. God is well capable of healing me, but He may choose not to. In the meantime, I am using every ounce of my being to serve Him and encourage others in a similar position to me that they can do it, too!

                I don’t really have anything more to say, apart from that I need people to know that no-one is DIS-abled. No-one is UNable to do anything. We are humans, we are all able to think and feel… Even someone that is paralysed has that ability. Nobody has the right to undermine anyone else’s quality of life or their worth. I feel an especial connection to the discourse on the “disabled” because I know that some people could look at me, as someone that lives in constant pain, and view my life as a not very fun one – yet I think I show them to be wrong! I’m pretty much always laughing, singing, and living life to the full! Despite the limitations that my body has placed on me.

                Actually wait, I do have something else to say – any “Christians” that go around telling people that have some sort of physical ailment because of some sin they have committed, PLEASE STOP. That is one of the worst things you can tell someone. We live in a broken world, and yes, sickness is a product of that, but to go around telling sick people that it is their fault they suffer in this way is not loving (and most likely not true!).

                To all of my readers who may be battling a debilitating physical condition, whatever it may be – visible or invisible – and/or the depression that is prone to come with it, know that YOU ARE LOVED, and you have so much to offer to society. You are strong, you are valued, and you are capable.

If you don’t suffer from a physical condition, good for you (I'm happy for you). Don’t forget how privileged you are in this regard. You have no idea how much I would give after four years of permanent pain (and lots before that) to just have two minutes of no pain. But even if I don’t get that, I will happily use my todays to give others hope for tomorrow. Don’t underestimate the power that you have to love people that society undervalues and remind them of their value and worth.

" You Are Loved".

All my love,

Ruth xxx