It can’t be easy, and I am quite certain that, in the past, I will have made many, many mistakes of my own in saying the wrong thing at the wrong time. The fact is, there is no instruction manual for these times. But over the past few months, there have been distinct conversations that have really stuck with me; times when I have found myself wanting to leap up and hug the person talking to me, and just thank them deeply for their considerate comment, explaining how much it means to me that they have managed to get it right.
Unfortunately (fortunately?), I have never done so. For two reasons. Firstly, it could get kind of awkward to just randomly hug people that I don’t know all that well – colleagues, fellow parents of children at my daughter’s school… I explain a lot of my odd behaviours by stating that they are in fact symptoms of MS (forgetting words, walking into things, that kind of thing) and I would feel bad if people started walking away from me thinking that another random side effect of MS was an inexplicable and inappropriate level of physical affection. Secondly, I didn’t always know right away just how much their comments were appreciated. Sometimes it is those moments (usually in the middle of the night, or when I am meant to be meditating, or marking, or whilst trying to concentrate on something else – lack of concentration is another MS symptom, and a real one, honest!) when I replay conversations in my head, trying to explore my reactions to them, consider their impact on my emotional state, that I realise just how much difference one little sentence or question can make.
So below is my list of The Right Things People Say. It comes with the caveat that everyone is different, and within that, every day, hour, minute is different, even for the same person. This is not a guaranteed fail-proof prescription for dealing with someone with MS (or another chronic condition, or any other life situation actually). It is simply a list of those things that have stayed with me as something that felt good to hear, for me, at that time.
- “So, how does it actually feel/ what is it like?” This one sentence is a gift. It says so much more than its actual words, its value much more than the sum of its parts. It is like someone handing you a long, beautifully handwritten note that says, “I care how you feel. I am interested in what is going on for you. I realise that I cannot understand this, but I want to. I have time, and I would like to invest it in you, and in trying to realise what is going on for you.” Wow. That is pretty special.
- “I don’t really understand MS – what is it?” As a teacher, I love the chance to inform and educate. I don’t reasonably expect people to know what MS is, but I am realising that some people think that they know, and that often they are wrong. MS gets confused with a number of other things, and even when people are thinking of the right condition, this is often attached to a lot of misconceptions. I love having the opportunity to put people straight, the way that this disease gives me chance to put some information out there that was not there before.
- “I could put you in touch with my friend/ colleague/ aunt/ cousin who has MS, if you think it would be helpful to talk to them?” MS is actually not that uncommon. Most people know someone who knows someone who has it, and whilst I know I am running the risk of sounding ungrateful here, I am just going to be honest about this. Unless you know that other person really well, and I mean really well, then the version of their condition that you try to share with me is going to be very heavily edited. Telling me that you know someone who has it but they seem to manage walking just fine, or have given up work, or are in constant pain, or they never feel tired, or whatever snippet of edited highlights they have shared with you, is just riddled with so many problems. It is hugely useful to be able to share information with other people with MS, and for you to offer me that opportunity is a true act of kindness, but please don’t try to mediate that process, or play messenger. Because I suspect it ends up a bit like Chinese Whispers, with much of the really useful stuff getting missed in the passing on between people. I’d like to talk to them, because I know they will get it, and I won’t have to explain myself, and it won’t feel like we are “comparing”. See next point.
- “I realise it is different for everyone.” Yes, yes and yes! MS has been called the snowflake disease, because no two people are alike. Hearsay about other people with MS can often feel accusatory. “My friend has it but she has not had any time off work at all/ been to hospital/ used a walking stick” comes across as a suggestion that I should not be doing any of those things either. To acknowledge the unique nature of this condition, and the huge variety in the type and severity of symptoms, is just a real gift of reassurance. It is saying that whatever it happening to me is ok. And breathe.
- “I realise that most of your symptoms are invisible.” Thank you! Yes, they are, but they are no less real. How lovely that you acknowledge this. It means a lot for you to recognise the fact that there are things going on in my body which show absolutely no outward signs. I have often thought that it would be easier to be covered in some purple spots that deepen and spread as the symptoms increase. I even admit that on occasion I have used my stick when I have been in two minds as to whether I really need it that day, purely to provide a visual clue (usually when I will be around strangers and people who would not otherwise know) that I cannot stand around for long, or walk so far.
- “I have been reading up on it since I found out you have it.” See point one, then multiply by ten.
- “Please tell me what I can do to help”. The beauty of this comment was the absence of “if”. People often say, “tell me if you want anything/ ask if you need anything”. To take away the uncertainty of whether or not, and instead ask about when and how, makes the offer of help seem somehow so much more genuine. I have needed help, and I will need help again, and I would always go to those people who have stated it as a given that they can be called upon, rather than those who moot it as a maybe. Sometimes that help is simple, not even practical, just an acceptance that I may need to cancel plans, or need to leave early. I am certain that, at some point in my life, I will need to ask the people around me for something, and it means so much to me to know that this is already accepted as ok long before the need arises.
However, all that said, the best right thing to say is to say just anything at all. Most people have the best of intentions, and the fact that people want to say anything at all is an expression of loving kindness. After all, and I repeat, there is no instruction manual. If all else fails, “I want to say something but I don’t know what” can go a long way.