How Do You Wish Someone with PSP Happy Birthday?

Tomorrow is my 51st birthday and a couple of responses and some recent comments made me reflect.

I have never been a big birthday fan, and I do not think PSP helps the overall mood. Each birthday marks the progression of the disease, a reminder of how much has changed since the last one and a quiet dread of what the year ahead may bring.

Yesterday I wrote a post about it. A handful of the responses I received stopped me in my tracks. They were well meaning, but they took time to internalize, and I’ll be honest that they made me bristle first.

That journey from bristling to agreement is what I want to write about tonight.

The first response came from an online health forum. Someone commented on my post with:

“Could be worse, I am xx.”

(They named a year much older.)

I know this was the original wording because it is what appeared in the email notification. On the forum itself, it had been edited to:

“Could be worse.”

My initial reaction was irritation on two fronts. First, the age comparison. Is it really better to face a terminal illness like PSP at 51 than at xx? Surely younger is more tragic, although perhaps younger also means better general health. And yet, what I would give for those extra years.

The more I thought about it, the less certain I became. It might be harder at xx if you have already carried a debilitating disease for years. It might be easier if those extra years brought grandchildren, fulfillment, experiences I have not yet had. I genuinely do not know how to compare one person’s suffering with another’s. It is not for me to judge anyone else’s experience against mine.

That left the phrase itself: “Could be worse.”

I have written at length about toxic positivity, and on the surface this is a textbook example, the kind of comment meant to comfort that instead lands as mild dismissal. How does being told it could be worse help someone who is already in it?

And yet.

When I let it settle, I had to admit that the context mattered. Especially when the comment came from someone involved with a complex disease by virtue of being part of the same health group, someone with their own stake in the disease. This was not abstract optimism delivered from a safe distance. It came from within the territory.

I still bristled. But I also had to admit that the statement itself was true. It could be worse. Significantly worse. I have PSP, but that is one part of my story, not the whole of it. Against that, I do not believe my PSP makes my life any more tragic. Far from it in some cases. It has sharpened relationships, clarified priorities, and stripped away things that once felt urgent but now feel irrelevant.

“It could be worse” is factually correct. I just find it hard to hear, perhaps especially because I agree with it.

I am actually grateful for the internal debate this comment sparked, and I thank the person who wrote it.

The second comment is not just related to yesterday but happens so often:

“You are looking good.”

Apart from at my daughter’s wedding where I genuinely appreciated it, I have come to dread it. Not because it is not kind, but because of what it often communicates. What I hear is: I thought you would look worse. Or more precisely: I expected you to look much sicker, and you do not, at least not sitting here in your wheelchair.

In some cases it even feels like: Why are you making such a big deal of this?

It sees the outside and misses everything happening inside. With a neurological condition, the gap between visible appearance and lived experience can be vast, and that gap can sting in a way that is hard to articulate and easy to dismiss.

And yet, again, as I write this on the night before my 51st birthday, I actually do feel okay. I am genuinely surprised by how well I am holding up (the new massage machines have been working away this morning). The proof, and I offer this as the least glamorous evidence imaginable, is that I am having Botox next week. Not for cosmetic reasons. For medical ones. No one has suggested it cosmetically.

But the point stands. The people telling me I look good are not entirely wrong.

So here I am, having bristled at both comments, and finding myself in reluctant agreement with both.

Which brings me back to birthdays, and to the question this piece is really asking.

What do you say to someone with a terminal diagnosis when their birthday arrives?

“Happy Birthday” is absolutely fine. Warm. Human. Sufficient. It needs no improvement.

What I would gently skip is the extension and embellishment. In the Jewish world we say ad meah v’esrim, until 120, invoking the age of Moses, the outer limit of a life fully lived. It is said with love and sincerely. It is, in its way, a prayer.

But said to someone navigating a terminal diagnosis, it can sit awkwardly. Not cruel, just uncomfortable in the specific way well meaning things sometimes are. It draws attention, however gently, to the distance between where we are and where the blessing points.

What actually helps, on birthdays and on ordinary days, is much simpler than any of these phrases.

Just this: “It is really good to see you.”

No comparison. No prognosis. No assessment of appearance or remaining time. Just presence, acknowledged. That is enough. In fact, it is more than enough. It is everything.

If you are reading this because someone you love has PSP and their birthday is coming, you are already doing the right thing simply by asking. Show up. Tell them it is good to see them. Mean it.

As always, I am my own worst hypocrite. I would almost certainly say all of the above to someone else, because it is genuinely hard to know what to say.

But now, on the eve of my 51st birthday, one year deeper into this, I know what I would want to hear.

Happy Birthday to me.