Conversations and situations: taking the controls back

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Nicola: Welcome to the MS Education Podcast series. Thank you for joining me. I'm Nicola Graham and in each episode, we're going to be joined by an expert to discuss strategies for living well with MS.

Today we're delving into the skills involved in good, clear, assertive communication, something that's useful for all of us. Multiple sclerosis can impact on many aspects of your life and communication is definitely one of the most important. Your ability to assert yourself around family, carers, organisations, employers, etc is essential and for some people this can seem to get harder with time.

Today I'm joined by Michael Gelfand. Michael's a social work advisor working here at Multiple Sclerosis Limited. Michael's completed both a Bachelor of Social Work and a Master's in counselling, and he has many years of experience working with people to achieve their goals.

Welcome, Michael.

Michael: Hello, Nicola. Thank you for inviting me to join you on this podcast.

Nicola: It's a pleasure. Let's get started. So, Michael, this podcast is called Conversations and Situations, Taking the Controls Back. Why is this so important for people with MS?

Michael: Over the years, I have been told by my clients that as their situation progressed, as their MS took hold, it was more and more difficult to keep communication in control.

MS sometimes gives you physical decline, cognitive changes, sensory changes, and for any or all of those reasons, you can sometimes feel a bit lost, feel a bit like the control that you used to have is decreasing. Sometimes it's subtle, sometimes it's very pronounced, all depends on your condition and also on the people and the situations that are around you.

So, I thought that it was time to have the conversations that I've been having with my clients out there in the open, where everyone can take a look and see what applies to them.

Nicola: And Michael, I know you talk about a way of communication that's not aggressive, it's gentle, it's simple, it's clear and that's so important, so I'm wondering, how do you respond to people when you hear them say that they're losing control in their communication and as a consequence they feel like they're losing some control in their life?

Michael: It's important to know that nothing here is completely different from what happens to most people. Most of us, as we get older, we lose some of our abilities. We don't run as fast. We don't jump as high. Our memories are affected. So, it's not that difficult to understand that there are going to be losses, and there are going to be things that people would just look back at and say, I could do it better.

What's different here is that MS can do this in a much younger age than what you would normally expect, and because of that, it will also happen with people around you who are still able to remember better, maybe walk faster, be more stable on their feet, but you don't feel that that is what's happening for you, and with that, communication can also get impacted. It can also decrease in, sometimes quality, sometimes ability to express what you feel and what you think, and with that, you can have a lot of changes that happen to you. You can have changes in self-perception, changes in relationship, changes at work. And this, for many people, can result in other changes that they impose on themselves, where they don't go out as much, feel more isolated, their mood sometimes changes and not for the positive, and their feelings can also go into a negative spiral. So, when I have the conversations with people to say that this is what's happening to me, we then have conversations about how to take control back, how to do it in a way that is gentle enough so that the other party, whoever that may be, at work, at home, family, they will go on the journey with you. Often people tell me that when they try to take control back, it comes as aggressive, and that backfires. Our conversations are usually about how to make sure that it doesn't. That it's more about linking with the other party and trying to achieve something better.

Nicola: Yes, and so really taking that other party on the journey with you, and that's such a fine art.

So, tell me Michael, in your experience, what needs to be done for people to be able to communicate more effectively and assertively and bring the other person or people along with them.

Michael: Fortunately, there are quite a few techniques and quite a few things that can be done. Some of them are possible to prepare beforehand, and some of them are things that can be done during the conversation itself.

Nicola: Okay, so could you give us an example of what we can do to prepare before an interaction so that we get the best outcomes and that we're communicating to the best of our abilities?

Michael: Many of the interactions that we have are not one offs. It's when we talk to family, to friends, to workers, and because of that, we can both prepare what we want to say beforehand and also sometimes go back into a situation and, right a wrong if things didn't go the way that we thought they could.

Relationships are like a dance. It's where sometimes the other party leads, sometimes you do, sometimes it's all happening together, and I think it's important to make sure that we understand it that way, that it is not a black and white situation that always happens a certain way. Most close long-term relationships usually benefit from a rethink from time to time, and there's a reason why we don't do it very often, and there are reasons why we probably should. We don't do it because sometimes we're afraid of change. Sometimes we're afraid that the other person will refuse our request. And sometimes we're hopeful that if we don't do anything, things will just right themselves and everything will be okay. If that is how it is because you're expecting very small changes, then that's okay. But when the condition of MS progresses and your situation changes significantly, it may be possible to do things in a more thought-out way. I would suggest a start of a conversation to be in a gentle sort of contemplating safe space, safe mood, with the person who is hopefully going to listen and participate.

For instance, let's say you're having a bad day. When do you talk to a person that you are living with, or sometimes made a time to be with, about the bad day? Do you hope that they will just notice and somehow account for that? Or do you tell them straight out? My suggestion is, tell them straight out. It's okay to say something like, don't expect much of me today, I don't think I'm doing so well. Sometimes if you know exactly what is happening, you can also talk about that. So, you can talk about, let's say, brain fog, or you can talk about mobility, if the two of you have gone shopping together.

Another example can involve a friend who always calls you at five in the evening. That's helpful. But you know you're not doing well at five in the evening. Your time is probably 11 or 12. And if it's at all possible, why not ask them to call then? I think even places like Centrelink or the NDIS or your doctor's clinic, if they call you to make a time, it's possible to think about, when does it suit me?

Of course, you want to be polite, you want to do what the other person wants to do, and if that's at all possible, fantastic. But it's usually more important to have the conversation, right, as opposed to having the conversation, and having it right usually revolves another time where you are at your best. So it's not a shame to ask for a change, and if the other party can accommodate, they would.

Nicola: Fantastic. Have you got some more examples of situations, Michael, where a person might take some more control in a conversation?

Michael: These examples are more about what can happen on the day or at the time of the actual conversation, or very close to it. We already mentioned the example of time of day where you may be working really well at 11 o'clock but your friend always calls you at five. Add to that maybe, temperature, where, let's say, you've made a time five days ago when the forecast was for 25 degree heat, and it's 38 today. You woke up, it's 38, you know you're not going to do well in 38, and you plan to go out together to do something, whatever that something is, you may want to reschedule.

Let's say that you were really, really busy yesterday, and you also know that if you have a very busy day, the next day you're going to pay for it and you're going to pay for it by the day being very difficult because your body's just not going to do well with two very busy days. You may want to reschedule what's happening then.

A bad night's sleep, for instance. We all know that a bad night's sleep means a bad day. And if you know that that's what's happening for you, you may call, reschedule, rethink, replan. Another hint can be one activity bleeding into another. So if, let's say, you've planned your day, you've packed it really, really well, everything is by the minute, but you run out of steam by about 12 o'clock.

Well, this is one more chance where you may want to reschedule as opposed to rush through. Because you also know that if you succeed, and you may not, you will pay for this the next day, and what's happening then? I think there are so many different ways in which you can plan ahead.

Nicola: I'm also hearing, Michael, within this, it's really about taking responsibility for yourself as well, isn't it, so that you're turning up and being your best self, more often.

Michael: That's right, Nicola. I think this is all about you looking at your day, looking at your world, looking at what you need to achieve from the day to the week to the month and thinking, how can I best do that? Absolutely, I want to be polite and I want to be respectful of others, but I also want to make sure that what my body teaches me about myself, what my brain teaches me about myself is taken into account.

For instance, let's say nothing's a problem. You woke up with not a single one of those obstacles that I was talking about before being present. So, you didn't have a bad day yesterday. The temperature is fine today. Everything seems well, but the brain fog is so thick that you can't put two thoughts together.

You don't need any other reason for MS to just give you a bad day. So how will you respond to that? How will you adjust? One of the more interesting things that I found my clients and I talk about, are external things. Clothes, for instance. With MS, the body finds it more difficult to regulate heat. And cold sometimes, and clothing becomes more and more important. Layering, for instance, as opposed to wearing too much and then being uncomfortable. Choosing clothes with natural fibres like cotton, linen, or wool can make a huge difference in the body's ability to breathe. And medications, or food, or water, or alcohol intake can all make a difference.

So basically, what fuel you put into your body makes a difference just like what fuel you put into your car makes a difference. Another something that is important around taking control, is literally taking control of your environment. How often have you come into a room and had to sit in an uncomfortable chair in an uncomfortable hot room near a window with the sun blasting right on you?

How often do you think you could have changed that? I know that when I come into a room, quite often I would rearrange the chairs. I would, maybe even, move a table if it's a small one. To be able to communicate with the person that is in there more easily and more deeply. I would advise you to have a look the minute you walk in to see what can and should be done, not necessarily expecting it to be, but involving maybe the people in the room and together, rearranging things just a little bit to make sure that you're comfortable and able to perform at your best. I think with all of those changes and all of those things that we're considering, it's important to remember the golden rule. That is, if you treat other people well, they'll probably treat you well too.

So, all of this, especially when considering other people and asking them to rearrange the space they're in, needs to be done gently and carefully and with their approval and cooperation. For example, when you are asking someone to rearrange a room, you may say something like, I'm very heat sensitive. Is it possible to lower the temperature? Or, I'm probably not that great next to a window because the sun is just too strong. Am I able to sit over there?

Nicola: These are great tips, Michael, and I can hear that using them would allow people to give themselves permission to take control, but they're also really respectful of everyone's needs, and I love your point about taking the time to think and prepare for those important conversations.

But what happens when you're in the midst of a conversation and you feel that it's not going well, and you need to regain some control? What do you suggest we do in that situation?

Michael: Well, quite a lot of people do what comes naturally, and that is, panic. Sometimes they would up their volume, sometimes they would walk away. I would suggest that none of those things are going to give you the best outcome. There are a few things that you might consider though. You might consider slowing the conversation down if it is happening too fast. Most people work at their pace, and naturally they would go to the pace of the person that they talk to, but if that hasn't happened, or if your pace is unnaturally slow today, you can ask the other person to slow down as well.

You may also notice that a conversation isn't going the way you thought it might, for whatever reason. You started, and it's going in a different direction. It's okay to say, I would like to take a couple of minutes. It's okay to actually say, you know what, I'd like to reschedule the conversation for another time. It's very important to reschedule and not to just abruptly cut a conversation because the other person may be a little mistrusting of that, especially if the conversation is really important to them. They probably don't want to have it completely forgotten so, rescheduling it allows them to understand that one, it's also important to you, and gives them a time for when they can prepare for it again.

You may find that some, especially complicated conversations, might be difficult to follow. Take notes. If you're able to always carry something that will take notes for you, or that you can take notes with, that's really useful. If, let's say, your hands don't work so well today, obviously taking pen and paper notes are not that useful. But, what about making a recording? Every mobile phone has a recording app already on it, and if you don't like it, there are at least a dozen free recording apps that can be downloaded from the App Store or from the Apple equivalent.

If you are going to record someone, or a meeting, you have to inform them. It needs to be done by consent because from a legal point of view, it's not always legal to record someone without their knowledge. It's important, I think, to also be able to maybe include the other person and ask them to keep the notes for you. They can email it to you, or they can give you a piece of paper if that's how it’s easier for both of you. I think sometimes, if recording is not possible, and you know something's important, you may be able to take somebody with you. I mean, two minds are always better than one, and hopefully they are not as invested in whatever's happening as you are, and it's much easier for someone in that situation to remember what takes place.

Nicola: For many people, when they go to see their neurologist, that's a key time to take somebody else because so often people say that they come out of their appointment from their neurologist and don't remember what was said.

Michael: Absolutely. Neurologists, Centrelink, sometimes important work conversations, your GP. You may also be able to prepare for conversations. Preparing for a conversation can be as simple as putting an agenda together for yourself, or sometimes even sharing it with the other person. And if the other person's language is different from yours, or their accent is strong, you may want to have an interpreter ready as well. You may ask another service. For an interpreter, and most programs and most places are easily able to gain interpreter if they have enough warning.

One of the other important things is to monitor your situation very carefully. That is, if, let's say, you're not doing well today, but you have an important meeting that you cannot reschedule and you cannot miss, you may want to say to the person you're meeting that there is a limit in the way that you're able to communicate, or in how long you can communicate. You can say something like, look, today, I'm only good for about 15 to 20 minutes. After that, I would struggle. I'll struggle to remember what is said and I'll struggle to follow the conversation, and that may allow the other person to do two things. One is cut the chitchat and get to the point.

Another is, maybe, not rely on the most nuanced conversation, but to be clearer and to check with you whether you are still able to communicate on the level that you would expect.

Another one similar to this is around listening, and that is listening is an art that is forgotten by some people, and so if you're not doing well and you may not be able to speak on the level that you would like, you may actually tell the other person, well I’m going to be doing a little less speaking, a little bit more listening. Do you think that would be a good use of our time? And most people understand when someone's not doing well, and most people who know a little bit about MS understand that some days are definitely not on the same level as others.

Nicola: They are great tips, Michael. Thank you.

I'm thinking now about when we're having a conversation and we're starting to feel quite emotional, maybe a bit activated, what can we do then?

Michael: Emotions are hard. They're easy to experience, but they're very hard to work around. If you feel that your emotions are taking over, and you feel that the intent and the sort of meaning of the conversation changes from what you originally thought, you may want to ask for a break.

That's a very important time, I think, to try and reboot the conversation into something else, and much closer to what you actually want it to be. If you say to someone, look, give me five minutes. I think our emotions are going a little bit high, and after five minutes I'm ready. That time you can use for so many different things.

I have a wonderful three-minute meditation that can happen that reboots my emotions, if that's happening to me, other people can rethink, they can definitely keep their emotion in check, they may actually think of the things that were said to them, and maybe some of them make sense, so that when you go back into the conversation, not only are you going back with a different emotion, and with a different, I guess, rhythm to the conversation, you might actually say to the other person, you know what, I thought of a couple of the things that you said, and, I agree.

There is nothing like saying something about agreeing with someone. They're very likely to respond positively, and if they respond positively, so do you. So, it's one of those situations where a five minute break can make all the difference.

There is an interesting and simple formula around how to communicate, and it's got three steps. The first one is, share your emotion, the second one is, state your need, and the third one is, make a clear request.

I would suggest a version of that when you're coming back from those five minutes of break, and an example would be something like, I miss seeing you as often as we used to. I know we're both busy, but what do you think? Could we make a regular time to catch up? Of course, if you're talking about shopping, that will not work, but if you were talking about how much deeper your relationship used to be, and that you would like it to, again, go a little bit deeper than what it has become, then an example like that would really fit.

Nicola: That's great advice, Michael, I really love this information. I know, personally, I find it really hard to take a break when I'm feeling activated and the conversation's not going as well as I'd like it to. So I know that to pause and to settle myself is going to have such a different outcome. It's a great reminder to me.

And I love that formula that share your emotion, state your needs and make a really clear request because, if it's one thing I've learned over the years is, being clear is really important. People are not mind readers.

Michael: Exactly. I think we often hope that the other person would know how we feel, would know exactly what we need, and would be able to accommodate. In my experience, if that happens, celebrate. But if it doesn't happen, you can't really blame the other person for it not happening. As an adult, it's your responsibility to let the other party know how communication works for you, and then it's theirs to be able to accommodate, or say that they cannot. If they can't, you know where you stand. If they can, you also know where you stand, so you're usually not worse off.

Nicola: And I can foresee some people asking themselves, is this going to sound aggressive? It's a new way of communicating for them. Am I going to offend the other person by being so direct?

Michael: I think aggressiveness and assertiveness are often mistaken from one another, and they shouldn't be. Assertiveness is the ability to communicate clearly. Aggressiveness is around communicating in a way that puts the other person down or does something that is not respectful of them. Assertiveness is actually respectful of both the person who's communicating and the person they're communicating to because it allows a truth and a depth of conversation to come through the communication channels, and it allows the listener to then respond honestly, because we're very good at mimicking each other.

So if, let's say, I'm aggressive to someone, they're very likely to be aggressive to me. If I'm kind to someone, they're very likely to be kind to me and, if I'm honest, they're very likely to be honest. Assertiveness is being honest.

Nicola: Thank you so much, Michael. They're wonderful, great tips. Certainly, plenty of opportunity for us to upskill our communication and to take back some control and I think to really improve the quality of our relationships in the process.

So, thanks so much for your time today, Michael. Really appreciate it.

Michael: Thank you Nicola.

Nicola: For more information on anything we've covered today, please get in touch with MS Connect on free call 1800 042 138 or email [email protected]. And don't forget to find the MS Podcasts on your favourite podcast player such as Apple, Google Play, Spotify, Overcast, or you can access the podcast directly from our website ms.org.au.