Not All Disabilities Are Visible

A confession: Before I was diagnosed with MS, I would often see people exiting their cars in a disabled bay and tut disapprovingly. There was obviously nothing wrong with them and I supposed they were abusing the blue badge they had somehow acquired. In one or two cases, I may have been right. However, rather more likely is the fact that their disability wasn’t visible to me.

As someone who’s disabilities are almost all invisible, I feel rather mortified that I simply assumed the worst in the past. Now I am the one who gets the suspicious looks when I place my blue badge on the dashboard. After all, I look fine, even very healthy.

MS is only one of many chronic conditions which conceal their symptoms. It does not mean that those symptoms are less painful, distressing or disabling. And these concealed symptoms are invariably the most difficult to explain to others. Very often they are misread or dismissed, because they are not manifest in an obvious way. This blog is an attempt to remedy this so that when we meet people with other chronic illnesses, we will perhaps be a little better equipped to understand them.

The twelve hour day

When I say I have a twelve hour day, I do not mean that I work for twelve hours, rather that I am awake and functioning for twelve hours. This can be hugely frustrating, as I’d love to have the same number of waking hours to enjoy as everyone else.

The reason for this, as for most people with MS, is fatigue. This is not tiredness and does not correlate to a period of busyness. (Though if you are busy, expect the fatigue to be ten times worse later). MS fatigue can strike at any time without any obvious reason. It’s worst for me when I get up in the morning after ten hours’ or more sleep. Sometimes I am happily doing a task when all my energy drains away leaving me dizzy, exhausted and sometimes even nauseous.

The best way I can describe this condition is to say that for a well person it is like going on a long-haul flight, getting drunk and then suffering from jet-lag and hang-over simultaneously. Tiredness is unpleasant; fatigue is revolting!

At its worst, I am left effectively paralysed, unable to even lift my eyelids because the effort is too much. Most of the time, fortunately, I feel its encroachment and go and lie down. That said, for someone who likes to be fully engaged in the world, endless hours on the coach unable to read or do anything but stare at the sky is rather frustrating.

There is a lovely young woman who comes to the puppy park who suffers from ME (chronic fatigue). Her visit to the park (she drives) is her main activity of the day and a chance to speak to others. The rest of her day is mainly spent in bed. Her friends think she is lazy.

And sometimes, this is the worst part. When we are made to feel lazy, we feel guilt at not working or doing enough. Though we know such options are not available to us, this simply adds to the sting.

Counting spoons

One young woman has written an essay, much repeated and referenced, in which she compares having Lupus to having a certain number of energy units in a day – spoons. Her number of spoons is much more limited than a healthy person’s and she must decide every hour of every day how to spend them. This practical way of showing how quickly the spoons can be used up (having a shower and washing your hair or making a meal for example) helps illustrate an intangible. I’m giving a link to the whole essay here, as I think it is excellent. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Miserandino’s article is neither whiney nor self-pitying. She realises that when one’s time and energies are that precious that you do not squander them. I too am desperately aware of how I need to make each hour count and this can be a blessing. Most folks wander about in a kind of somnambulistic stupor imagining that they have all the time in the world to do what they want and wasting great swathes of it. Fatigue focuses the mind on the essentials and I have found that I experience life more deeply and gratefully as a result.

Physical limitations

One of the most confusing aspects of MS is that there is variation in our physical abilities. So if you were to ask me, ‘Can I walk?’ I would have to say yes and no. Yes, I can walk for a certain distance before everything starts to stop working. (This it the point where I walk like a drunken sailor and crash into people). I may begin with a normal gait and good pace, but I’ll invariably end on a bench.

How can I explain this? My best approach has been to suggest that one views my lesions as roadblocks, because that, crudely, is exactly what a lesion is. It is scarring on the myelin sheath that disrupts the nerve signal. (The greater the number of lesions, the greater the number of road blocks – hence the wide range of abilities amongst MS sufferers.)

For me to walk from A-B, my brain has to take all sorts of circuitous routes to keep my legs doing what others do naturally. If I were a car going from Eastbourne to London, I would detour to any number of little villages and towns in between rather that taking the direct route. So my little walk feels much more like a twenty mile ramble, with the subsequent exhaustion and leg pain. The same applies to mental activity. Even a lunch out with friends can prove debilitating.

That said, I am a firm believer in neuroplasticity. If I can keep channelling my nerve signals through the healthy pathways, I can, in time, recover something of what I’ve lost. This is how I can walk a little further and function a little longer than I have in previous years, despite the natural effects of ageing. It does require a great deal of effort on my part, but the outcomes more than compensate.

Can you see my pain?

Well, no. Pain is, by definition, invisible and it comes as a surprise to many that it is a very real element of MS. My legs give me most bother and I have finally found some medication to help with that, though the pain never really goes away and is exacerbated by activity. For others, their pain may manifest in crushing headaches, neuralgia or back ache. On its own, pain is unpleasant, but when it is chronic – and at times acute – it can be terribly wearing. Keeping a cheerful disposition and not succumbing to self-pity and depression is a constant battle.

MS has many other invisible symptoms that I do not have time to mention here. Everyone’s MS is unique to them and no two are likely to have the same experience. So if you know someone with a chronic condition, it is best to ask how it affects them rather than basing it on others you might know. One might be running marathons, the other bedbound.

Invisible disabilities are hard to grasp – even for those experiencing them – but if we take the time to listen and learn from others, I hope that we shall be more understanding when we see that fit looking person exiting a disabled bay. And if you see someone wearing a lanyard with sunflowers, you’ll know that they are dealing with much more than meets the eye.