Sticks and stone may break my bones and your words DO hurt me

We've been hearing words like 'vulnerable, 'sufferer' and 'underlying condition' in the news on a daily basis during the COVID-19 crisis. Here, Helena Jidborg Alexander from the MS Trust's Information Team, talks about the impact of those words when you are in fact a person considered 'vulnerable' and who is living with an underlying health condition. 

I was asked today, “Are you a vulnerable person because you have MS?” This constant talk of vulnerable people and who is vulnerable really has got me thinking about the word itself. It certainly is a rather negative word and makes you feel like you are viewed as someone helpless. As a person with MS, I get offered a free flu jab every year as I am considered more at risk. Not so much because I could catch the flu more than others, but because I could struggle with MS symptoms while the body is trying to get rid of the flu. So in this case I am more fragile; more vulnerable than the rest of us.

The whole coronavirus crisis has also labelled me as more vulnerable than the general population. But even this scale of ‘vulnerable’ is different from person to person. We may all get lumped under the vulnerable umbrella, but in order to get help with things like shopping and delivery you need to be extremely vulnerable. This list can be found here. Does it mean that everybody with MS gets to be called extremely vulnerable? No, it doesn’t. A quick scan of the list shows that it is only people with MS who have more severe symptoms, such as breathing issues, and who are on the strong DMT’s that may suppress your Immune system. It is not always clear cut. I am monitored every three months for my white blood cell count, as it is considered very low, but not quite low enough to get me onto this list. The fact that it isn’t a clear cut list aside, in this case the word is actually a quite useful word. Being slapped with that label ‘Vulnerable’ can indeed help some of us.

I’ve also always detested the word sufferer. I know some people with MS do refer to themselves as sufferer, but for myself I have always hated a word that puts such a big label on me, like all I do is suffer. I am no longer Helena, I am she who suffers. In all honesty, in these weird times, I think we are all suffering a bit. But again it is just a word, albeit a word that aggravates me.

Speaking of feeling aggravated by words, I do feel like I need to speak up about the other word that really gets my goat. Well two words actually… ‘Underlying condition’. This is bandied around as though it should all make us feel calmer, as the people who have been hospitalised or died were either old or had an ‘underlying condition’. People even tell me that to try to calm me down, forgetting that… oopps she has MS. I do understand that this comes back to the point about being vulnerable and that I need to perhaps lower my annoyance wall and accept that the word is there to help me. By admitting that, in this case, I am indeed vulnerable and I do need some help, but it doesn’t make me less of a person, nor does it make me weak.

But to hear it time and time again that "the person dying from Covid-19 had an underlying health donation" being used as a "calming measure" for the general population, well I don't know about you but it certainly doesn't make me feel any calmer!

Going back to that list of the extremely vulnerable, I have seen a lot of links to articles about how if there is a shortage of respirators, perhaps the people on this list would not be prioritised and left to fend for themselves. A rather ‘survival of the fittest’ dystopian take on it all, which again makes you feel like a second rate citizen. Sad to say, I think this is something we as an MS community may have felt even before this whole covid-19 ordeal. I saw this on the Bart’s research blog; they were entertaining themselves with a game of who would you save if you had 3 patients that all need one respirator.  I really hope for the sake of humanity that we don’t get into this situation for real as it can be extremely scary to think about. In general, humanity as a whole has showed a very caring and loving side during these uncertain times, supporting the NHS, setting up groups to help the vulnerable and so on. I haven’t lost hope in humans just yet!

But I do wish that people who think that just because they don’t have an underlying condition that they can carry on like before, not realising that their behaviour can really affect the ones who do have those underlying conditions. I saw one of those Batman slapping Robin memes, you know the ones (if you don’t, you can just Google that phrase), where Robin gets slapped when he says “But I am young and healthy” and Batman roars “You’ll kill Alfred”, meaning that if Robin goes out and does his thing, he might bring back Covid-19 to the Wayne Manor and infect their beloved butler Alfred. So if you don’t have an underlying health condition and you do like to point out that “Well, the only ones who die have an underlying health condition” maybe think twice as so many millions of us do and it isn’t calming us down. You staying indoors and doing your bit does calm us down far more.