Before I was diagnosed with MS seven years ago, my thoughts on the illness were very negative. I would never have thought that I could live with it. Since then, I have heard many people, from professionals to strangers on the street use very negative language when describing or discussing MS.
While some of this language can be correct and appropriate in certain instances, it is often misused. Since my diagnosis I have become more aware of how I feel when I hear certain words and phrases that are used in relation to MS. These are the main words and phrases I wish people would stop using when talking about MS.
1) Using the word ‘patient’ indiscriminately
I understand the dictionary definition of this word and why people use it, but I feel it can be a little dehumanising. I am more than just a patient. I am a person with complex layers that form my identity and I just don’t feel that the word ‘patient’ is sufficient in describing me. In actual fact, I don’t feel that it describes me at all.
I may have MS but I am still a person with an entire life going on in addition to my condition. MS is a small part of my identity, so when I am described as ‘an MS patient’ it diminishes me and can make me feel like a condition rather than a person. I feel like this removes the control I have of my identity and how I present myself to the world. It might be a way that others describe me, but it’s certainly not how I would choose to describe myself.
2) Saying ‘she suffers with MS’
This is similar to the point above in that other people tend to use it. I would never say I ‘suffer’ with MS. I live with it, I deal with it, but I don’t suffer with it. I was diagnosed and had a string of symptoms, but anything that has happened has since undone itself. Don’t get me wrong, some people do suffer, and if that’s a word they use to describe their situation, then that’s perfectly fine.
But it’s not my experience. People tend to use the same phrases to describe all members of the MS community regardless of how the condition impacts them. It’s not lost on me that I am doing well, and there are others in the community who haven’t had the luck that I have had. I am only speaking from my own experience, but when someone says that I ‘suffer from MS’ I am quick to correct them. It would be irresponsible of me to let people think that what I am going through is suffering and it diminishes the experience of those who feel they are suffering. It’s also a very frightening way of describing life with MS.
3) Describing MS as a fatal condition
While there is no cure at the moment for MS that does not mean it is a fatal condition. MS is only seldom fatal and death is usually caused by systemic complications associated with the disease in the advanced stages of MS. The usual life expectancy of someone living with MS is only slightly less than average, so describing it as a fatal condition is not appropriate.
4) Implying that my condition will deteriorate
There is no denying that MS is a progressive illness, but it’s not helpful when people prematurely jump to doom and gloom. MS is different for everyone. Over the years I have learned not to worry about what could happen, because it may not. Yes, my condition may deteriorate in time, but why should I spend time worrying about that now?
Sometimes people seem surprised when they discover that I have MS as they associate it with visible disability and at the moment I don’t fit that description. Often, the next thing they do is comment on how I should enjoy being well while I can. I have to laugh at the irony in this. Enjoy being well… while I can. How can someone ask you to enjoy being well while simultaneously instilling fear of what may come? MS is unpredictable – things may happen, just as they may not.
5) The word ‘affliction’
I sometimes feel that the use of negative wording when discussing MS only adds to the perception that MS equals zero ability and a very low quality of life. This has certainly not been the case in my experience. Sure, MS can be nasty, but I wouldn’t say I have an affliction. It sounds so sinister and negative and my experience with MS to this point does not warrant that kind of negative language. I may change my mind as time goes on and I do not speak for anyone but myself. We are all individuals with our own unique lives, experiences and identities. I just wish people would stop using such troublesome language when talking about our collective community. We are a vibrant, varied and multi-faceted community and negative language fails to describe us accurately.
UK/MED/18/0290 October 2018