#InvisibleIllness VS #VisibleIllness. How REAL is real ENOUGH? #chronicpain #mentalhealth

A few weeks ago on social media, someone I know was discussing a moment which truly knocked them for six; a moment where ignorance became arrogance and invisible illnesses meant having to prove yourself to people. The a few of the comments which appeared underneath their post made me feel sick and a bit upset, I couldn’t even begin to imagine what they felt like at the time. Ever since that FB post, I have become even more determined to fight for the right to remove the stigma attached to invisible illnesses; starting right here, right now.

Let’s start with the basics.

If you were to look at a person walking down the street, would you be able to tell if they had an invisible illness or not? No…
Why not?

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Notice a difference (apart from the gender, smart alecs)? No, because to an outsider, or even our friends and family, we look absolutely hunky dory. However, this is where it gets interesting. People WITH invisible illnesses are anything BUT hunky dory, believe me, I should know. According to PapWorth Trust website, there are about 11.9 MILLION disabled people in the U.K. Now that figure covers both invisible AND visible illnesses, however, the website also states that 38% of those 11.9 million people are disabled due to breathing issues and/or fatigue, with mental health coming in at a mere 16%. I know what you’re thinking; ‘how is fatigue a disability?’ or ‘why is mental health a disability?’. Whilst those are actually okay questions to ask if you genuinely do not know the answer, they are also bloomin’ ignorant questions too.

& I will tell you why…

The definition of invisible illnesses, according to Wikipedia is: ‘Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living’.
To what extent day-to-day activities impair a person, all depends on their make up AND what illness(es) they are having to battle with. Invisible illnesses come in a range of different sizes, such as: fibromyalgia, crohns disease, coeliac disease, diabetes, chronic fatigue, Ehlers Danlos Syndrome (aka join hypermobility syndrome), IBS, lupus, MS, rheumatoid arthritis, carpal tunnel syndrome and many, many more. Mental health is also one of the many illnesses that remain ‘hidden’. However, the term ‘mental illness’ covers a HUGE range of illnesses/disabilities such as schizophrenia, bi-polar disorder, PTSD (post traumatic stress disorder), depression, anxiety, personality disorder, ADHD, AND even anorexia and bulimia.

Fatigue is classed as a disabling condition due to the fact it isn’t just TIREDNESS, nor will an early night or a rest just simply fix it. Chronic fatigue is when your body is absolutely exhausted, you may even fall asleep anywhere and everywhere and then wake up feeling as if you haven’t slept for weeks. The slightest thing will make the person even more exhausted. So, to a regular, healthy person, when they get tired they do get an early night, manage to sleep and wake up full of the joys of spring. For sufferers of fatigue, we want to sleep but more often than not, we can’t or sleeping doesn’t even do what its supposed to do. Therefore, seeing as fatigue/overtiredness will lower our reactions, hardly safe to go back to the day job of being Bob the Builder now is it?

As for mental health and why that is a disability, I actually cannot believe people are still immune to mental health as a topic. Imagine feeling trapped inside your own body, scared of your own thoughts and your own actions, without the ability to rationalise anything. Sounds scary doesn’t it? It’s debilitating for sufferers as their minds are controlling every single thing within them, and has binned the hope, good memories and warmth to oneself; replacing them with thoughts that they don’t even recognise. How on earth can you tell someone to ‘snap out of it’ when you have absolutely NO idea what their minds are doing to them? & yes, anorexia IS classed as a mental illness, even though people do assume that an anorexic CHOOSES not to eat, or that a bulimic CHOOSES to purge. No, no, no, NO. They don’t just wake up one morning and go ‘I know what I’ll do today, starve myself/make myself sick as I’m bored’; the reality is a lot different and much scarier. Sufferers of those two illnesses lose the control over how food, and their bodies, are viewed, meaning the one thing they have control over is whether that substance enters or leaves the body in a way that THEY choose.

In 1995, when I was five years old, I started to get bullied. At first it was name calling, or asking if they could do a dot to dot on my face as I have freckles. But, before long, it became a lot worse. The name calling turned to ‘omg fatty’ and ‘people can hear you before they see you as you’re rocking the ground’. Bear in mind I was FIVE, I wasn’t fat but even if I was, I was FIVE. The vile name calling continued to ages and it even branched out into physical attacks, however, my problem was about to get even worse than that. Food became a poison, and if I did eat a little, I automatically thought I would end up looking like the Michelin man, even after eating a cracker. Did I choose to feel that way? No, I didn’t. At school I had to get watched by the dinner ladies to ensure that my food was eaten before I left the dining hall, and not thrown in the bin; I managed to get round that though and put the food in the bin. At home was a similar situation, except I was dropping food on the floor or drinking water/fizzy drinks before and with my meal, to fill me up. By the time I was 11 years old, I was ‘rocking’ the scales at 4.5 stone with rehydration sachets becoming my new ‘bestie’. Well, in theory anyway. I hated the way I looked. I hated the way food left me. Yes, I was a mess as eating became too much and too upsetting, I was scared of it. Unfortunately, the bullying days continued until the age of 13 when we moved away and my home circumstances changed; my eating was minimal but at least I was eating. When I became 18, a massive 13 years after it all began, I was able to look at food in a different way, but I still had no idea what hunger felt like. I’m 27 now, and to be honest, I still don’t truly know what hunger feels like as, despite people’s thoughts, the actions of an eating disorder may diminish, but some sufferers truly cannot recover from the illnesses, mentally. It stays there, in the back of your mind, waiting to attack again; it still hinders me now.

All what I have mentioned so far is 100% real, yet to the eye they’re invisible. But are they? Really? The illnesses themselves may be invisible, nobody will go ‘oh I can see your diabetes!’, yet they might go ‘you’re shaking!, as more often than not, the symptoms are what’s visible. However, to make it even more confusing, those illnesses could have over 600 symptoms to it. Take hypothyroidism for example (underactive thyroid). You won’t say that you can see a problem with a thyroid itself, hell, not many know where it actually is! You may notice how a hypothyroidism sufferer may be lacking in colour, dull eyes, hair loss, fainting, to name a few. But then again, folk are way, way too quick to judge and more often than not, come out with ‘ah your hair will grow back’. Erm, maybe so, your point is? ALLLLLLLL of the invisible illnesses are only really invisible if the sufferer chooses not to divulge them and/or pretend they are in fact ‘hunky dory’, to save judgement, OR they’re only invisible as people CHOOSE not to see them as there isn’t ‘any evidence’.

Bryony Gordon wrote in her latest book, Mad Girl, about chest infections and how because its seen/heard, people are more likely to tell you to go and fix it. However, all the stuff that is hidden people do not take seriously, meaning we then have to prove ourselves. At the beginning of this post I mentioned a FB post and the disgusting comments, I have had the permission to name that person with a bit more information. Angela Clarke, author of Watch Me, has her own health limitations and got made to feel guilty for using the disabled/easy accessible toilet and having to PROVE herself ‘worthy’ to use it, with a disability card. The comment on the post AGREED with said person who required proof as we could be lying.

Come again? If we wanted to lie about something we would choose things WAY more beneficial to lie about, instead of being in pain 24 hours a day, 365 days a year. Totally lie worthy! Why SHOULD we have to prove ourselves? Just because YOU cannot see it or you CHOOSE not to believe it, doesn’t make us liars or our illnesses any less real. We already feel failures, shame, embarrassment of what our lives have become, without ignoramuses judging our every move.

We are only touching the surface with this post and I will be back another day, with another post because I NEED to support my chronic illnesses sufferers and campaign to rid the stigma.

Why? Because my name is Kaisha and I have to live with hypothyroidism, carpal tunnel syndrome (with chronic muscle wastage), fibromyalgia, joint hypermobility syndrome, IBS, anxiety AND depression, every single day. Tell me, are my illnesses REAL ENOUGH yet?

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Dream a little dream….

Dream a little dream of meeeee do do be do do de do…
You singing yet? Thought so. Did you have a childhood dream? By dream I mean something plausible and not the obvious one about wanting to be batman, or superman, or wonder woman! I mean seriously, we have all wanted to be one of those….or Iron man! No, I mean a dream that you would have done anything to achieve. You thinking about it? Good. I had an amazing ‘what I want to be when I grow up’. Well, two. I actually achieved one of my dreams when I was in my teens. I wanted to be a checkout girl! Stop laughing, I’m being serious! I wanted to work on the checkout so that I could sit down all day, I made my dream come true at 17. True story. As a child I wanted to be a singer, got plenty of practise singing into the light hanging from the ceiling…..’you know we belong togetherrrrrr, you and I forever and everrrrrrr’. Home and Away eat your heart out! Choreography was also on point, I mean, if Sclub 7 or Steps needed new members me and my brother could have filled in at a moments notice! We were that good. Well, we thought we were. In this day and age we would probably be seen as the joke act on the X Factor! Now there’s a thought!
I did have one other dream though, I wanted to be a published writer. I wanted to publish a children’s book for my own children. Is that still an aspiration of mine? Yes, it is. I never thought I could do it, I still don’t, but I don’t know unless I try. This is why I’m here, writing for you. Now while it is funny that I wanted to sit down all day back then, it’s not as funny now if you think about me and my situation. My situation is me being chronically ill, with not one, not two, but six conditions. Six that won’t go away. I could sit down all day, but unless I want to look like I’ve just been sitting in a freezer all stiff, moments after getting up, I can’t. Take my fibromyalgia for example (all over body pain – issues with the nerves, but can affect every part of your body), for an outsider looking in, it’s obviously far too easy to go ‘just get an early night and you’ll feel better’ or ‘take time to rest, you’ll feel better for it’ or ‘think positively’. Why didn’t I think of that!  Imagine this a second, imagine not being able to make any plans because you don’t know how you’re going to be when you wake up every morning, being exhausted just from taking a shower, parts of your body hurting and you haven’t done anything to make them hurt, feeling like you’re letting your loved ones down for not being ‘you’. How does that make you feel? Scared? Like you have lost a part of you?
You grieve for the life that you have lost, a life that had no limitations, a life you had more control over. Will I accept that I’m never going to get better, and that I’m reliant on tablets to keep me alive? To an extent, yes. Because that is the case. Will I accept that my life now has limitations…my body has limitations? Yes! I have to! It is either push myself and flare up for goodness knows how long after, or prioritise and be able to do things with my daughter and flaring up because of fun and not because I cleaned the kitchen floor. Not saying my kitchen is dirty by the way, totally an example!!
When you get told that you’re chronically ill on multiple occasions, you don’t really get told much, you have to go to your good friend Google. Me and google are BFFS!!! The illnesses are all completely unpredictable in their own very special (ahem) ways. The cognitive problems are sometimes more hurtful than the pain because I feel I can come across stupid if I get my words muddled up. I don’t want sympathy, I just want to be remembered. Not that hard really is it?
So the dream of me wanting to be a writer, a published writer, and feeling that now is the right time..you want to know why? Because me taking the control and working hard to try to make it a reality, is probably one of the few things I can be certain about. It is down to me to make this work. Words won’t write themselves. I have the control. I love to read, I love to write. If you truly want something and you know full well that if you don’t do it right now you may not even be able to do it in a few years time, it’s a kick up the youknowwhat. Grab the bull by the horns! Actually, don’t, I don’t think that is allowed. Is it?! Plus I can hide behind what I write to an extent. That isn’t me being false, it’s a way of escaping what I have to face. I may write something emotional but you won’t be seeing me cry so the embarrassment factor is no longer there.

Despite all of that, since 2013 I have had one main aspiration. One that will always be with me. I want to make my daughter (and my mum) proud of me. Every day is a battle for me, in various ways. Some days have more battles than others and I know I’ll not win every single battle I come up against. Does that bother me? No, not anymore. Whilst inside I think I’m Iron Man and can do everything, I can’t. I shouldn’t be expected to either. You all have your limits, be aware of them. Be true to yourself and the ones that love you, otherwise you will feel guilty. Believe me.

If you have somebody close to you right now that is needing a pick me up, don’t be all ‘awwww i’m sorry’ be all ‘here, have a cookie’ or just remember them. Goes for anyone really, even a stranger. I’m learning every single day that I fight my battles, but one thing I know is clear, the little things are what make it. The little things are important because they make up the bigger picture. You have to start somewhere…..