It doesn’t have to be a 'difficult conversation'

The theme for this year’s MS Awareness Week is MS Conversations. Now, I’ve had conversations about my MS with family, friends, health professionals, employers, and even complete strangers over the years. These have all been different, depending upon me, the person I’m talking with, and how I felt at the given time and date.

Some of the most difficult conversations I’ve had about how my MS affects me have taken place in the workplace, when I’ve been trying to impart how my condition affects me to someone who has no knowledge about MS or how it can affect someone. It’s frustrating and difficult trying to summarise the many aspects of MS, and the differing symptoms I experience, in a relatively short conversation. Trying to get someone with no previous experience of MS to understand that every day is different, and that sometimes I may look ‘fine’ but am struggling with some of the many invisible symptoms MS can throw your way, is hard. It’s just hard. And it’s tiring.

It's hard for employers too

I understand that employers aren’t always trained to deal with having those conversations either. But it’s really hard for me to be able to put my point across and try to get them to understand how things are for me with MS. I’m simply not able to articulate years of disease progression in a quick ten minute tête-à-tête, so that I can justify why I would benefit from reasonable adjustments, for example.  

I like to think of myself as professional and articulate at work. Calm and good in difficult situations. But ask me to talk about myself and I turn into a wittering wreck within seconds. Many people with MS will recognise that feeling when they struggle to find the right words, or remember what they want to say. Inevitably, I finish each conversation thinking: “I wish I’d said that”. And that’s annoying.

Meerkat brain vs owl brain

Like many others, I experience that horrible feeling when I’m under pressure or stress, where my brain decides it's going to shut down its rational/reasoning part, (let’s call it the 'owl' part of the brain), and leave me with the crazy, irrational, meerkat-like part of my brain. This has the helpful outcome of leaving me stuttering and struggling to find basic words to express myself properly. Then afterwards, I have little recollection about much of the discussion.

That’s how I feel when I talk about my MS at work.  

So how can this process be made easier? How can I have meaningful conversations about my MS at work, which don’t leave me feeling like a gibbering idiot? It got me thinking about some training I did in both my previous job as a police officer, and in my current job too, about ‘managing difficult conversations’. And it got me thinking, maybe employers should consider this training when considering how they can help and support those with MS at work? 

I mean, it’s pretty fundamental. 

Tips for managing difficult conversations

There are 4 key areas:

1. Communicate

Ask me how you can help. 

2. Listen

Understand that I might find it difficult to talk about how MS affects me, but be patient when I try to tell you. And understand that I can’t tell you everything I need to tell you in one conversation.  

3. Dos and Don’ts

• Don’t expect me to tell you everything you need to know about MS in one conversation.
• Don’t offer your own experience or knowledge about someone else with MS. No two people with MS have the same symptoms or disease progression.
• Don’t make assumptions about my limitations or what may help me.
• Do ask me questions. I'm the best person to tell you about me.
• Do familiarise yourself with the law (like the Equality Act 2010) and your responsibilities as an employer.
• Do find out more about what MS is.

4. Check your understanding 

If I say something you don’t understand or I’m not clear about something, please ask me! Don’t make an assumption or guess what I meant.

What I do differently now

For my part, I now make use of notes if I’m to have a conversation like this at work. I find it helps to have something to refer to when my brain decides to leave me incapable of rational thought. Then I also have something to jog my memory afterwards. 

So that I don’t forget things I want to say when I become stressed or worried. So I have more confidence about saying what I want to say. So I remember afterwards the things which we talked about. And finally, so that I’m not finishing the conversation once again saying: “I wish I’d said that.”