“How are you?”

Obviously, context matters. If it’s a doctor or MS nurse asking how I am, then I know what to say. There’s a kind of script for those situations – I’m describing a problem or the resolution of a problem, and hoping the person I’m talking to can help.

But sometimes we may need to think more carefully about what we say, for example when responding to friends and family members.

‘How are you doing?’, says my sister.

What do I say? Well, quite often I say something fairly meaningless like ’Fine’, or ‘Surviving’. Usually followed by, ‘And how are you?’, which cleverly shifts the focus away from me to the other person.

MS is a part of me, but not the whole of me

And what’s happening in that second after someone says, ‘How are you?’. For me, thoughts chase themselves through my mind:

Does she really want to know? Do I really want to know? She’ll be upset if I tell her how I am.

I don’t want to be the person always banging on about their symptoms, boring people, burdening people, becoming over identified with my illness. MS is a part of me – a big part – but not the whole of me. So ‘fine’, I say, ‘surviving’. If I’m feeling talkative, I might say, ‘Surviving. It beats the alternative’.

It’s often said that politicians never give a direct answer to a question. I think that I, like many people with long term health conditions, can give politicians a run for their money when it comes to avoiding answering questions!

And I don’t always want to think about how I am, especially if I’m struggling. So it can feel easier to avoid the issue. Our struggles are ours and we don’t always want other people to know the full extent of them. We may not want to look too closely ourselves.

But I find that if I know how I am, then I often make better choices about how to use the energy I have.

Raising awareness of MS

What I learned over the years was that the ‘How are you?’ question offered me an opportunity to raise awareness about MS without always having to go into a detailed discussion of my own situation.

I retired from my last job quite a few years ago now. But when I was still working, I found it helpful to explain MS to my boss and immediate colleagues, and talk in general terms about how it affected me. It eased us into the discussion about changing my hours and working shorter days.

MS is unpredictable and changeable

Like many people with MS, early on in my illness I had a choice to make. MS can be such an unpredictable and changeable condition. I don’t necessarily know day by day how I’m going to be or what I’ll be able to do. So the choice lies between never arranging anything because I might have to cancel at the last moment, or arranging something anyway, knowing I might have to cancel – and accepting that reality without unnecessary angst or self-criticism.

In my experience, once I’ve explained the realities of MS and its impact on me (fatigue, bladder issues, and so on), people have been understanding and accepting of my seeming unreliability.

They have understood that if I’ve needed to cancel an arrangement at the last minute, that’s because I’ve not been well enough, in that moment, to continue with it. They know I’m not just messing them around and that I’m not ‘unreliable’ without good cause.

Opportunities to do things differently

And it’s opened up opportunities to do things differently. So now friends might offer to pick me up rather than me having to make my own way to an event. Or we might all meet at my house, rather than meeting up at a venue.

Everyone’s circumstances are different, but generally speaking, I’ve found that people who care about me will adapt to try to help me participate in social events if I explain the problems.

They end up with a better understanding of MS. And I’ve found that if I’m open, that sometimes frees up other people to talk about challenges posed by their own health. Then we can all try to help each other, which is lovely. They say, ‘How are you?’. I say, ‘Do you really want to know? The long version or the short version?’

So sometimes there’s a bigger conversation to be had when someone says, ‘How are you?’. Difficult as it can be at times to acknowledge my own vulnerability, I’ve found it helpful to be honest about my circumstances and limitations, with myself and others. 

Maybe honesty, appropriately directed, really is the best policy!