As many of the people who’ll be reading this know, I’ve been writing recently about my cancer diagnosis and treatment. I’ve also been writing about my less recent diagnosis of multiple sclerosis. From time to time I’ve found it hard to write these posts because I’ve been struggling with the question of whether sharing as much intimate detail as I have is a good idea – and I’ve not even shared every last detail.

The response I’ve got on Mastodon*, on LinkedIn and in person has been universally positive. It’s always possible some people are self-censoring given the situation, others might be sitting there feeling uncomfortable with my somewhat unBritish display of emotion and weakness. However, I’ve not seen any hint that this is the case.

And I’ve drawn significant strength from the response I’ve got. Knowing people are thinking of me, sending me thoughts, or love, or hugs bolsters my resolve and helps with the development of a positive attitude. I’ve heard a couple of positive (surprising) things about myself that have put a spring in my step. Frankly, it’s made me happy and helped get me through some of the worst moments.

But being open has given me more than this:

Being open has increased my support network Almost as soon as I was diagnosed with MS, I started a Journal Group. Because I was being open on this blog, on Twitter and with work contacts, I was able to talk publicly about my plans for the Group and already had a growing network of people in a similar situation. I had a great response and over the year and a half we’ve been meeting, we’ve had some really good discussions about the latest research into both treatment and management of the disease.

The Journal Group itself is a safe space where we talk about how we are with people who really get it. The support I take from this is important for me. I finish each session feeling good. In addition, our discussions about the science of the disease mean that I also feel more confident about the questions I need to ask my consultant. I’m then able to get more of what I need from my very rare consultations with them (I might write about my consultant interactions later).

Being open means I’ve heard about, and started, additional cutting edge treatment My work sees me working with scientists and scientific institutions. I told someone I’d worked with about my cancer diagnosis. They have put me in contact with a senior person at the centre of the most up-to-date research into many diseases.

As a result, I’ve heard about additional treatments on top of the chemotherapy and radiotherapy I’ve been getting from the NHS. For the past five months my wife and I have been travelling back and forth to Germany for ‘Immuno-oncological’ treatment (basically helping my immune system to attack the tumour cells). I’m hoping that this is going to significantly increase my odds.

Being open allows me to be honest about what I’m capable of at a particular time My friends, family and work colleagues are fully aware of what I’m going through. This means that when fatigue hits and I’m not able to go on a walk, work that afternoon, cook supper etc (tick as appropriate) they aren’t put out and swing in to cover for me.

It also means that I’ve been able to talk to my family and closest friends about my hopes and fears. They’ve been able to support me through the darker moments and really enjoy the lighter ones.

A friend told me one way in which my blog posts have helped them. This surprised me – I’m writing the posts for me, not you! More seriously, this friend said that my posts help them to have the language to talk about what I’m going through. The more I think about this as I write it, the more I wonder if this is part of the reason I’m finding my interactions with friends and family so much easier, we’re all talking about the same thing.

So what would I advise anyone in my position to do? There are such positive things gained from opening up, from being vulnerable and just talking about what I’m going through, I’d advise that people tell everybody everything? Actually no. There have been two things which together have brought me up sharp and focused me on on my privilege.

The first of these is bubbling away in the background. It’s the rule we’ve set for the MS Journal Club – don’t talk about who comes to Journal Club. There are a number of people in the club who are worried about the effect on their careers of admitting that they have a potentially disabling disease. And I fear they are right.

Similarly, a friend from when I was very young sent me an email after my last post about my cancer treatment. They had read more of my blog and told me they’d also been diagnosed with MS. But then they said they’d not told anyone, not even their mother. And again, I think, reading between the lines, their main worry is their career. But they are also worried about the impact on their mum.

It’s very different for me. I’m a cis, white man with a science degree from Cambridge who is at the top of his career. It’s easy for me to be open. In fact, men are often not open about their struggles. I’m in an industry where I think I get some credit for being open.

As with all my posts, I get to this point and wonder what it is that is driving me to want to write it and then say it publicly.

In this case, I think I’m focused on the injustice of this position. I’m not advocating that we “out” people who are struggling with a life changing diagnosis, with unbearable grief or whatever it is that means life is a challenge. The decision to talk about it must be left to them.

Instead I’m left wondering what we can do in our social groups and at work to support people who might not feel able to tell us what they’re going through. I don’t have any answers to this beyond asking you to show as much support, love and compassion to each other as you’ve shown to me.

1 September 2023

Image description: An old wooden door to a church stands open. A yellow stone porch and bright sun can be seen through the door. The inside of the the room is dark. There’s a tiled floor, red tiles and grey tiles alternating.

Picture credit: Richard Croft / Open door

* I’ve been chased off Twitter because I don’t want to support nascent fascism and lost contact with people who mean a lot to me. @sburall@mastodon.social on mastodon if you’re there and want to join me.