My Blog Is a Selfish Indulgence

That is a strange thing to write after publishing so many posts about living with Progressive Supranuclear Palsy (PSP).

I know many people would disagree. In truth, so do I…partly anyway. My hope has always been that these blogs raise awareness of PSP, help other patients and carers, and give people a better understanding of what it is like to live with a progressive neurological disease.

Yet I have come to believe there is another truth.

A blog is, by its very nature, a selfish indulgence.

Not selfish in the sense of being uncaring, but because it gives me a platform to talk about my fears, my frustrations, my lessons, and my hopes. It is a place where my thoughts take centre stage. Writing has become therapy for me. It gives purpose to days that could otherwise feel empty, and it helps me make sense of a life that has changed beyond recognition.

I am grateful that so many people choose to read it.

But there is an unintended consequence.

The more visible my own struggles become, the easier it is for other people’s struggles to disappear.

Over the past year, I have more than occasionally had the feeling that some friends have stopped sharing their own worries with me. Whether that is true or simply my perception, I cannot say. Perhaps they think that, compared with PSP, their problems seem insignificant. Like me in other circumstances they are worried about what to say to me. Perhaps they do not want to burden me. Perhaps they believe I already have enough on my plate.

Nothing could be further from the truth.

The reality is that almost everyone is carrying something.

Even within my own relatively small circle of family and friends, I know people who are grieving the loss of parents, coping with redundancy or the fear of losing their jobs, living with trauma or post-traumatic stress, battling serious illness, facing financial uncertainty, or carrying burdens they rarely speak about. I know people whose suffering is at least as great as mine and, in some cases, undoubtedly greater.

And that is just the small part of the world that I happen to know.

Others are trying to navigate an economy being transformed by artificial intelligence, wondering whether the careers they have spent decades building will still exist in a few years’ time. Some are caring for ageing parents. Others are supporting children through difficult periods, coping with relationship problems, facing mental health challenges, or simply dealing with burdens that few people ever see.

Those worries are no less real because they are different from mine.

My challenge simply happens to be more visible.

I write about it. A lot! Probably way too much, many would say. It has a name. It affects how I move, how I speak, and how I live. Because it is public, and because it is frightening, it naturally occupies a prominent place in people’s minds.

But visibility is not the same as significance.

We naturally notice the struggles we can see. We often miss the ones we can’t. That doesn’t make them any less important.

I sometimes wonder whether people who once valued my perspective now hesitate to ask for it because they see me first as a patient. If that is the case, I think it is a loss for both of us. PSP has changed many things, but it has not taken away my ability to think, to listen, or to help someone wrestle with a difficult decision. Yet, at least. If anything, I now have more time to give than I did before.

Equally, I still need my friends, far and near!

Not simply to ask how I am feeling, but to tell me how they are feeling. To share their fears, their frustrations, their successes, their jokes (sometimes) and their hopes. I don’t want every conversation to revolve around PSP. In fact, many days I would rather it didn’t.

Friendship has never been about deciding whose life is hardest. It has always been about walking alongside one another through whatever life happens to bring.

I have written before about avoiding toxic positivity and about better ways to support patients. I stand by every word. But there is another side to that conversation.

Please don’t let compassion create distance.

Don’t stop telling me about your career worries because mine happen to be different. Don’t avoid asking my opinion because you think I have enough to cope with already. Don’t keep your own struggles to yourself because you believe they somehow matter less than mine.

They don’t. And if I have been too tough and scared you off, I apologize.

Every one of us is carrying something.

Mine just happens to be the one lots of people can see, partly because of the disease itself and partly because I choose to write about it so openly. Knowing my rather obsessive-compulsive nature, that probably isn’t going to change!

If this blog achieves anything rather than just being buried under the Tsunami that is my blogging, I hope it is not simply to make people understand PSP a little better. I hope it also encourages us to have a little more empathy for one another. We rarely know what someone else is carrying, even when they seem to be coping just fine.

Perhaps that is the irony. What began as a selfish indulgence may yet have a selfless purpose.

I hope anyway.

My blog may be about my life.

But our conversations never should be.