Mental Health and Community – Duchenne Dads and Male Mental Health

Written by Partnerships and Outreach Manager Alex Berbank

You can listen to the audio recording of this blog here:

It’s somewhat of a buzz term currently. We know it’s an area that has been neglected in the past but has anything changed and currently as a bloke today, how do you realise when you need help with your mental health and where does that come from? 

In short the answer to that is: it’s different for everyone. This won’t be the blog post that answers all questions and suddenly makes your situation clear for you. I don’t want this either to be seen as exclusionary to women too. The fact is a lot of the pressures that men face about mental health women do too, especially mums, this is just looking at mental health from my male perspective and experience with talking to other men about this subject over the last few years. 

What is Mental Health?

Broad start, but for me this is the first common ‘misinterpretation’. We all have mental health, just as we all have physical health. Mental health has come to mean poor mental health. If my friend said to me that he was starting to look after his mental health, instinctively I’d think that he must have had a difficult time of things lately, and yet if the same friend tells me their plan to get fit and run a marathon I dont have the same instinctive thought. That’s because we’ve normalised the idea of having better physical health as an aspiration. The UK’s most common new year’s resolution is to lose weight and get fitter, it’s something we understand the route to achieving. It makes sense, the healthier we are the less chance of getting ill, the more energy we have, we do more as a result. Eat less fatty foods, exercise more, stay at it. Where do we go about improving our mental health? How do we even identify what it is that is contributing to it? 

So let’s look at what it is to have ‘poor mental health’- for me it’s hard to decipher between when a low mood because of awful circumstances and thus a healthy reaction to events and when is it poor mental health? Where’s the threshold? The men I speak to often tell me the same thing; ‘It is what it is’. A blanket statement saying that this situation is so hard for my mental health I wouldn’t know where to even begin to look at what I can do to improve it. When I try to explain what it feels like to people that aren’t in the Duchenne world I say that going through the diagnosis is like being kicked off a boat in the middle of the ocean, and the thought of improving your mental health is then the task of working out how to swim to shore. You have no idea if you can swim that far and no clue how to work out what direction you’re meant to swim in. For me I may be swimming for my whole life and never reach shore but i’ll feel better for trying than I would for floating in the middle. For others they need to float for a while, take stock of everything and then when the time is right set out in what they believe to be the right direction. . We won’t all react the same way to the same circumstance. Finding how you want yourself to behave and react to the situation is the real challenge we have. 

Doing Something About It

Doing something about it as men is another fundamental difference I have seen. In my experience the default reaction to the challenges Duchenne throws at us is to internalise it first. For some that’s days or weeks of not talking to other people about it, feeling like we have to remain stoic and to be the head of the family. It also means taking the anger out away from the home, not letting those around us see how much we are hurting. It’s not exclusive to men but it is a pattern of behaviour I see. We have to be honest with ourselves and think, is this how I want to react? When I was a child it was seen as a feminine trait to cry or be scared or show emotion, not just from my parents but by the whole of society. Part of that stays with me now and makes it uncomfortable for me to be vulnerable. That makes it harder to start the dialogue and talk to friends about how you’re feeling. 

As men I think we find face to face conversation more intrusive. So much of what we do together or spaces that we can open up to one another are when we’re not really looking at each other. It’s a strange quirk but think about it. Car rides, playing sports, going on walks, watching sports are all really good opportunities for guys to open up, and I believe it’s because the direct eye contact isn’t there like it would be sitting across from each other having a coffee. The only exception I can think of for this is at a pub but are we more relaxed at a pub because the majority of the time at least one of us has had a pint or two before anyone has started talking. It might be something to bear in mind, if you yourself just can’t find the right place to feel comfortable enough to start talking about what it is you feel then consider doing it alongside an activity. The draw of an activity can make the flow of conversation easier. If you’re playing darts with a friend, you can always make light of your lack of ability and how you swear you were much better than this when you played last. The deeper conversations are easier to have, there’s less pressure to fill the gaps, you’re both enjoying each others company and you talking about your feelings isn’t the only thing that needs to happen.

If you are reading this and think that having a face to face conversation with an old friend seems quite daunting or even if you know a bloke that needs to get a few things off his chest, consider the invite to an activity where eye contact isn’t always needed and just see if that makes talking a little easier. 

Another thing Dads tell me they are apprehensive about is, opening up a little and then the dam bursts and everything comes out. I get told I won’t be able to stop if I think about that or get talking about this. It’s pressure, if you realise this is a thought you’re having then holding it together is just increasing the pressure you’re under. Eventually, for everyone, the pressure becomes too much and the dam bursts anyway. It’s about being in control of when that happens. For new Dads to Duchenne, it’s a case of when not if the breakdown will come. I’ve sat with dads, I’ve cried with a few and had my arm around others as the emotion hits us. The one thing they have in common is they all feel better for it. The nature of DMD means that unfortunately we get hit with these feelings again and again. The pressure we put ourselves under builds. To release some of that in whatever form it takes is healthy so long as we do it in the right environment and way for us. 

It’s OK to Struggle

It starts a long process of turning everyones opinion on what it means to be masculine in today’s age and more importantly it consciously shows the others around us that its Ok to struggle with the emotions and pressure that the condition brings with it. The experience of many Duchenne families is that life can become more isolating as less places become available and less people understand the nature of it all. Even more reason not to then self isolate yourself from your own family network. Letting your partner or child know that you are just really struggling with it all today isn’t as vulnerable as it may sound. In opening up you are also validating their feelings of fear and anxiety.

I don’t have all the answers but I’m determined to be part of the solution. 

None of this is easy. If you’ve read this far and it struck a chord, let’s talk it doesn’t have to be face to face, it could even be over text. But I’d like to talk about it with you.

Im available at alex@actionduchenne.org or on 07939973981