This is a long post in which I muse on something I read a while ago and how it’s helping me deal with my MS diagnosis, via a few stories about how not knowing about it stopped me helping my sister after hers.

In my last post, I talked about my diagnosis with MS and about my sister Katie who had MS for over twenty years.

A long time after Katie’s MS diagnosis I came across this article which really helped me make sense of I how could be most helpful to her and others around her.

In essence what the writer does is draw concentric rings around those who are affected by whatever the big thing is. The person affected is in the middle. In the next ring out are those who are closest to that person, their spouse for example. Next ring out parents, then close friends and so on.

These rings come with rules. The person at the centre who is facing the challenge is the most important person. They get to dictate the terms of their relationships with everyone. If they want to complain, they can complain. If they want to talk about something else, that’s their prerogative. They might be in heightened pain or state of anxiety that day and really need to think of something else.

Everyone else can do the same, but critically, only to those in rings outside theirs. The rule is that you provide support and comfort inwards, and push fears, anxieties and self-centred emotions out.

I found this really helpful. It helped me to realise that my role was to support Katie. It was to be there for her. But it was also to an ear for her husband and go to see Katie as often as I could so that he could have an evening off. And I needed to try to be there for my parents, to listen to them and support them emotionally.

The real challenge with this system and set of rules is that it’s very difficult to tell if you’re getting it right. You know when you’ve got it really wrong – and I know I hurt my parents when they felt me judging the way they were interacting with Katie when I had only a limited understanding of either their relationship with her, or the hurt they were feeling. It isn’t an excuse that this was a natural brotherly feeling to try to protect and support her. It was wrong and I wish I’d realised it at the time.

And I got it wrong with Katie too. She pushed many people away at different times. Sometimes for good reasons and sometimes for reasons that felt capricious and like she was lashing out, taking out her anger at having MS on those closest to her. There was at least one time when I dug my heels in and she pushed me away. She wanted me to leave my shoes on when I came to visit. She said she could smell my feet.

This pushed many sibling buttons. I told her she couldn’t smell my feet and I’d had a long day, my feet were hot and I was taking my shoes off. Travelling to and from her house took at least three hours and five buses or trains. It was a really big imposition on my time. The kids were a lot younger then, and I was aware that on the evenings I visited Katie, my wife was picking up a lot of slack. A significant part of me wanted Katie to recognise this, to acknowledge it. So taking off my shoes felt like one step too far.

But it was her home and it was a small thing. She refused to see me for what felt like 6 months, though at this distance I have no idea how long it really was.

I wasn’t listening to her. I had made it about me, and my feelings. By that point she was in a wheelchair with two 24 hour carers. In pushing me away, she did the only thing she had the power to do. This left me feeling angry and meant that Mark, and my parents had to pick-up the slack. By making it about my emotions, I had actively made it more difficult for the people giving up a lot more than I was .

The idea of the circles of care helped me to understand that it wasn’t about me, my feelings or what I wanted. I had to find a way to listen better to Katie and try, as best as I could, to respond to her. When Katie was ready to see me again, I tried to sit more lightly with my feelings and listen more to what she wanted to talk about, do what she wanted to do even when I really didn’t.

One of the reasons it isn’t easy to get it right is that the people in the circles closer in than your own need contradictory things. They may not even really know what they need. They need emotional support on their own terms. What they shouldn’t have to do is support anyone outside their circle emotionally, or deal with someone else’s strong emotions – however much that person feels they have some sort of right to it through accident of birth, or a long history of friendship.

This doesn’t mean no emotions though! Because the person at the centre of the storm also needs those in circles further out than them to respond emotionally to what they are feeling and saying. They need empathy so that their emotions are recognised without someone else’s emotions swamping their own. Critically, they don’t need their emotions solved or got rid of, or wished away; recognition of what they are feeling will help them come to terms with it. This in turn will make their feelings easier to live with.

How does this all relate to me and my MS?

The system isn’t as simple as the article makes out. At least not for me. From the perspective of the outside world, the inner circle is my wife and me. Between us, I’m at the centre. The kids are very close to our inner circle and for some purposes actually form an inner circle with my wife and me outside – such is the nature of being a parent.

My parents and brother-in-law are in the next circle. This is an important circle. They offer the prospect of unconditional love and support. Unfortunately, they’ve been through all this before and so have lots of experience too.

One fear I have is that MS will come to dominate all of my interactions. MS is a big thing to carry around. I’m currently so new to it; every twinge and tingle raises anxieties that it’s another relapse. I could let this consume me, dominate my life and give into the anxiety. But I’m damned if I’m going to. It is what it is; I have a disease which may affect me profoundly, but it isn’t currently.

On the other hand (did I mention contradictions?) right now I’m really feeling the need to talk about it, have it acknowledged – hence this blog. But only so much…

I don’t want MS to dominate because it isn’t the only thing in our lives. The kids are growing up. They need support and nurturing, and they need their successes celebrating.

We’ve got lots of friends and many other things going on. All of these things are important too, as important.

Beyond this, or different purposes different people will be at the centre of more and less important circles. It’s important I recognise this because otherwise my MS will come to dominate everything and I’ll end up not supporting other people who need it too.

MS is a progressive disease. This isn’t a short sharp emergency that will either be solved or end badly with everyone but the person in the centre having to find some way to move on (talk about a euphemism). And therefore it isn’t the only challenging thing we’re going to have to deal with.

There are going to be other events, other illnesses and challenges where I’m not in the centre circle, where I’m the one providing support, lending an ear, helping round the house or whatever. I certainly don’t want to end up in a centre circle defined by my MS and end up being excluded from other positions in other rings. For example, my parents are getting older, at some point they are going to need more support and they’ll be at the centre of their own circles.

I guess I’m just restating what many people with disabilities have been saying for decades. I don’t want to be defined by my MS, but I will need accommodations made sometimes. I like to think that I had some empathetic insight of this before, but now I’m really beginning to feel it.

So I’ve found the concept of these rings helpful in understanding my role when Katie was alive. But since my diagnosis I’ve found them useful for two other reasons.

As I said in my first post about my MS, my biggest symptom is my fatigue. The concept of the rings has given me permission to focus on myself when I need to. It’s largely helped me stop feeling guilty about the fantastic adaptations to my role that Involve has been making for me. And it’s helped me stop feeling guilty when I can’t help Pam around the house. We’ve tried to make sure that we end up with 50% of the work (physical and mental loads) each. But there have been many times in the past few months where I’ve not been able to do things around the house, or have just been completely focused on myself.

It’s not easy to sit on the sofa reading a book when Pam is still up and about cleaning the kitchen for example, but I’ve slowly come to realise that the fatigue will pass, and if I manage it sensibly it will pass more quickly. I’ll then be more use around the house. Allowing myself to accept that my diagnosis is a big thing and that I am at the centre of it all has freed me up to be more sensible about how I look after myself.

Thinking about the rings and my place in them has also helped me deal with people who are less helpful. They’ve helped me with the person who fired intrusive questions about my health at me apparently with no idea that I might not want to answer them, or the person who tried to tell me about a drug that someone else was on for a totally different disease, or the people who don’t say anything even though I feel we are close and would actually quite like recognition that I’m struggling, that Pam may be finding it hard.

The rings help me understand why I’m finding these interactions challenging. And though I won’t be able to change that person’s response or behaviour, I can change my own response to it – I’m finding zoning out quite helpful.

The rings help me put an emotional barrier between me those people who find these kinds of life changing diseases more difficult. I don’t try to fight them or my feelings, because they too will pass.

Finally, the rings help me appreciate those many friends who have been fantastic. The friends who have altered their schedules to go on a regular walk with me, ready to listen if I’m having a bad day, or talk about something else to help me stay connected with the rest of the world. The friend who heard me when I was obviously really struggling and took me off to the cinema – we watched the musical The Heights which neither of us would have watched and both of us enjoyed immensely. And the friend who did nothing more than gave me a hug (at a time when restrictions allowed it).

They haven’t needed to say anything, or do anything more than simple gestures, and they’ve made all the difference.