For Those Fighting Serious Illness Alone

I mention all the time the incredible support I receive from family and friends. I have also spoken about how fortunate I am not to face serious financial worries. That security came through many years of hard work, not because I was born with a silver spoon in my mouth. Don’t get me wrong, the entire financial plan I had for my future has gone out the window, but so far I have been able to absorb the shock and prepare as best I could.

Others are not so fortunate.

There are many people in our community whose spouses have died, whose marriages have ended in divorce, or whose partners are simply unable to provide much support because they too face their own health or personal challenges. There are others who chose to live alone, a decision that worked perfectly well until the day they received their diagnosis. I may be wrong, and some people undoubtedly cope well post-diagnosis without much support, but I suspect it makes an already difficult journey even harder.

From a financial perspective, there are many patients for whom it is either impossible, or seems impossible, to do anything other than keep working because of their financial circumstances and obligations. Others still have to drive because life leaves them with little alternative. It is easy to offer advice when I have had the privilege of making the difficult decision to retire voluntarily and to stop driving, even though I hated both decisions. Not everyone has that luxury.

I often talk about how important support is. It becomes even more important in these situations. Some people receive it from children, siblings or close friends instead of a spouse, but many are left to face this disease largely on their own or reluctantly accept help with strings attached, such as being required to make significant lifestyle changes or move geographically to live with a child. I cannot pretend to fully understand what that feels like because it is not my experience, but I can imagine how incredibly difficult it must be.

I have little advice to offer because it can so easily sound patronising. What I can do is raise the issue and urge myself and others to provide support wherever we can. Personally, if I can help through a support group, a chat, or simply by listening, I will do so whenever I am able.

I would urge anyone facing this battle alone not to cut themselves off completely. If possible, find just one person you trust who can offer even a little emotional support. Sometimes that one person can make an enormous difference.

To those reading this who are in a position to step forward and help a friend or loved one facing this battle alone, please recognise the struggle they are facing. It is naturally harder to step into the shoes of someone living with PSP if you have not been sharing that journey yourself. Friends, siblings and even adult children already have lives, careers and families of their own. Offering meaningful support often requires genuine sacrifice, which is why those who choose to step forward deserve enormous admiration. Where you can make that difficult choice, I salute you.

Support does not always come from where we expect. I recently watched a Netflix programme in which Chris Evert spoke about the support she received from her former husband during her cancer treatment. I had not expected that, but her diagnosis brought them closer together as friends. It was a powerful reminder that support can come from unexpected places.

Let us not leave members of our community behind by assuming that everyone has a soulmate or close family to carry them through serious illness. That simply is not true. We have a responsibility to notice those who are alone and, where we can, help carry a little of the burden.

I have enormous respect for those fighting this battle without the support that so many of us rely upon. It takes remarkable courage.

I hope that our community is far broader than those fortunate enough to have financial security and strong family support. Good luck to all of us, and may nobody face this journey believing they have been forgotten.