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Hidden Illnesses and the Kindness of Strangers…

When we hear the term “hidden illness” most of us think immediately about mental health issues. And yes, mental health has become somewhat of a poster child for the phrase. That’s actually a great thing, awareness about different mental health concerns absolutely needs to be raised and the topic needs to be discussed much more readily. But what about all the other conditions that you can’t see?

I’ve talked briefly about hidden illnesses before. But this time, it’s personal. Let’s take a look at my immediate family and take a little checklist of the qualifying conditions. Bear in mind, these are just those that I know about. My family has the absolute right, as do you, to keep their hidden illnesses, well, hidden. Private is probably a better word. So, there is depression, epilepsy, multiple sclerosis, Sjogren’s Syndrome, congenital heart defect, migraine, arthritis, cancer and anxiety disorder. Some mental health conditions, some auto-immune conditions, some wiring problems and some organ issues. If I lined my family up, you could not tell by sight who suffers from what. Hidden. Invisible.

What other afflictions, conditions, diseases, disorders are out there that you simply can not see? Diabetes, digestive disorders (Crohn’s, IBS…), chronic pain, Fibromyalgia, Aspergers, Endometriosis, Lupus, Lyme disease, spinal disorders, narcolepsy…the list goes on and on. Most of these are not just conditions whereby you take a couple of painkillers and you’ll be ok in the morning either. Many of these are actually classed as a disability. That entitles you to certain benefits and in the UK, sometimes even the hallowed Blue Badge parking permit. Yet, many suffering these disabling conditions are subject to abuse for it, because there are no outward signs.

The individual stories of my family members are not mine to tell. So, you will have to make do with me…

CPTWN

This is me about to cage dive with Great Whites in Cape Town – do I look depressed?

RARO

This is me trekking on a South Pacific island – do I look like I have epilepsy?

SKYDIVE

SKDV

This is me skydiving in NZ – can you see my MS?

BTRD

This is also me. Have I had an accident, was I attacked, did my partner beat me? No, I was on the receiving end of an unforgiving seizure.

Not so many months ago, I was in a shop looking a little worse for wear. My hair wasn’t washed, I was very pale, had huge dark patches under my eyes and I had bruises and needle marks on my arms. People avoided me. Why? They saw junkie; they didn’t see the after effects of almost a week in hospital on a steroid drip to try to save my sight. Judged by appearance.

I’ve been seen falling in the street in the middle of the day. I’ve been left there while people walked past me, assuming me drunk. They didn’t consider I might be ill. I didn’t look ill. There was no car that had hit me, no stone I tripped over. I was judged, again, by appearance. Strangers picked me up and helped me.

I don’t look sick; most of the time. A losing battle with epilepsy often leaves me bruised and a bit battered, but on the whole, I generally look ok. I smile, therefore I’m not depressed. I laugh, therefore I’m not in pain. I don’t use a walking aid, therefore I’m not disabled. I’m not wearing a cast, therefore I’m not broken.

I’m not a religious person really. I have a set of beliefs that I hold to me and I keep them private. There is one bible quote, however, that resonates with me. It’s from the Gospel of Matthew – “Judge not, that ye be not judged. For with what judgment ye judge, ye shall be judged: and with what measure ye mete, it shall be measured to you”. I feel that it’s actually not so much biblical but rather plain old common sense, and it matters not whether you attribute it to Matthew, Buddha, Jesus, Muhammed, the Dalai Lama or your Gran.

Don’t judge others, unless you wish to be judged yourself. And if you do choose to be judgemental, then remember that what goes around, comes around. We, in general, have very little clue what goes on behind closed doors, but remember what you physically see will never be the full story.

As an adult, still in control of my faculties, I’ve chosen to share with others my hidden illnesses. I do this for a variety of reasons. Some selfish, some selfless but in there is the desire to bring some conversations to the front and centre. I don’t believe that you have to spill your guts to all and sundry to be part of the discussion, but I do think we could all be a bit more forgiving with our thoughts and jump not to the conclusion that the person who isn’t walking in a straight line and looks like they may fall, might be drunk but they are just as likely to be ill and in need of assistance.

Would you be willing to offer kindness to a stranger?

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If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!