What Parkinson's has taught me about friendship
An inevitable consequence of being given an unwanted medical diagnosis is that, at some point, you then have to tell people close to you that you have been given an unwanted medical diagnosis
An inevitable consequence of being given an unwanted medical diagnosis is that, at some point, you then have to tell people close to you that you have been given an unwanted medical diagnosis.
The knock-on effect of that is that, once told, those people then have to react.
In the nearly four months since being presented with the unwanted results of the DaT scan, I have received broadly four types of reaction.
These are presented below in a ‘power rankings’ format.
No response
The least common, admittedly, but a few. These were unique to group chats or email chains with multiple recipients where there is a diffusion of responsibility to reply.
Given you are only telling people who you think would be interested in knowing or need to know for whatever reason, I was quite surprised that anyone was in this category, but you remember who they are.
Don’t do this.
Sorry to hear this.
A warm, perfectly acceptable and appreciated response, with only faint echoes of an auto-generated Gmail reply in some cases.
I was grateful to everyone who took the time to send one of these messages. Don’t underestimate the impact of a simple act of kindness.
Let me know if there is anything I can do to help.
I think this is the type of response I would generally default to if the scenarios were reversed and I was told of someone’s ill fortune: an illness, a bereavement, a break-up etc.
There would be a genuine willingness to assist. To lighten the load for that person. However, equally, you're unsure of what they need and how to help rather than get in the way.
Does this person want to be left alone? Do I risk further suffocating them at a difficult time? Do they want tangible support now more than ever? Just let me know!
It is a kind, welcome sentiment. I truly appreciated all of them. However, I have learned there is a preferable way to phrase that offer…
What can I do to help?
A subtle but impactful twist on the above.
An active request. I want to help - tell me how I can be helpful.
Although 3 and 4 could be interpreted interchangeably, I felt a difference when presented with a variation of the latter.
It is direct. It is specific. Can I do (X) for you? Do you need help with (Y)? Would (Z) make things easier for you?
Inevitably, people in difficult circumstances will need support, but may also feel reluctant to impose by asking for it. Especially once the initial ‘glow’ (for want of a better word) has worn off and what was once news is now an accepted reality.
I can't truly imagine messaging someone out of the blue and asking:
“Remember three months ago when you asked if there was anything you could do to help, well, I actually do need childcare for my next hospital visit. So shall I put you down for a school pick-up at 3:15 next Tuesday?
The more specific the offer of support, the more I felt supported. Real examples included:
“Let's get out for a run on Saturday”
“My partner works in HR, do you need her to look into anything for you?
“I know someone who has lived with it for 25 years and said they will be happy to speak to you. Would you like me to put you in touch?
I nearly shed a tear in the office one day after reading message after message from a former housemate listing suggestions of ways they wanted to help, with an underlying tone of urgency and intent.
Arguably, I am late in reaching this conclusion, but the last few months have shown me to be clear and direct with my own offers of support to others in future.
It's better to risk being overbearing if it increases the chances of the recipient accepting the help they would like.
Whereas, well-intentioned as I'm sure they always are, the chances of an undefined offer turning into something useful start off smaller and decrease as time passes.
What I have also learned, more recently, is that there is a fifth way to respond.
Just do something
The highest bar to clear, but I am fortunate to know several people who didn't wait to be asked. They just did things to help.
I want to share one such example here.
In less than two months, the above WhatsApp message turned into the below.
At the time of writing, more than £2,600 has been raised by this one run alone and those funds will make a genuine difference to the small charity it was in aid of - Spotlight YOPD.
It is an amazing effort, an amazing gesture. One which has humbled me slightly.
I will reiterate that I am lucky to have a broad support network: partner, family, friends, colleagues and other well-wishers.
I also live in the South-East of England where there is more third-party support and resources available closer to home.
Clearly, not everyone who receives difficult news is in as privileged a position.
Part of my aim for starting this blog/newsletter is to connect with others experiencing the same thing and create a digital support network where people with YOPD can listen to and help each other.
You can't have too many places to do that, I figure.
Regardless of who is in need and why, I now know that the best way to support them is to ask precisely what I can do. And ask more than once.
Or, maybe, I'll just do something.
Hi Iain, just read your blog and it has resonated so much with me. My son, Alex 35yrs, has just been diagnosed with YOPD. He has moderate Learning Difficulties and hearing impairment, so a different difficult situation I guess. Look forward to reading more of your insightful, well written blogs to perhaps help me understand more what he is experiencing. Take care and thank you Gaynor