I spoke to someone recently who is at the start of this long and arduous journey and she reminded me of what it’s like at the beginning, when the future is uncertain and the world is a scary place. When you don’t know what the plan is yet and you don’t have any answers. I’ve had a year to reflect on what has been helpful for me and what has been a bit unhelpful. So with that in mind, here’s a few things to consider when someone you know has been diagnosed.
Give them space
I know you are worried sick and want to be kept informed every step of the way. You want to know every little detail. Any news? What did the doctor say today? When will you know more? When’s the next scan? What are you going to do? The truth is, a lot of these questions can’t be answered and even if they can, do you really think I want to repeat what was said over and over again to keep everyone in the loop? If you’re not the closest person in their life then you can’t be kept updated every step of the way because it is exhausting to even utter the words once or twice never mind keep repeating it. It’s stage 4, they said I might die, they want me to do palliative chemotherapy… Not nice words to repeat! Remember, I don’t feel like this now, I’m out the other side, but I remember how difficult it was to have the phone ringing constantly with people looking for updates every five minutes. I ended up turning off the phone and ignoring calls. I couldn’t keep it up. Just take it that you’ll hear news when it’s important and when you need to know and for now, give them space and just pray or send well wishes. Their world is upside down and out of control and no sense of normality exists. And hearing terms like stage 4 or terminal or palliative is really hard. Imagine repeating that over and over? It’s damaging to a persons positive outlook to even hear those words. Repeating them makes them real and that’s not where the focus needs to be.
Similarly when scans come up, there would be phone calls and texts to wish me luck and the ‘let me know as soon as you know’ from ten different people. Everyone means well but they don’t realise how exhausting that is. I started to keep my scans and appointments to myself. Not because I wanted the results to be a secret but because it drained the life out of me to be on the phone repeating the same bad news over and over and dealing with other peoples emotions. If you think about it, it’s quite unfair to do that to someone. They need time to absorb what has happened and giving energy to others is very difficult. Again, I am out the other side of all that now but in the beginning it was really hard.
Don’t treat them any differently
The nicest thing for me was when people treated me the same as they always had and chatted about normal things. Someone said to me once, oh god listen to me going on about work and you with your bigger problems. Please tell me about your shit day at work and your horrible co-worker and stop putting all the attention on me! It’s nice to switch off from my own problems sometimes. A conversation was usually centered around me in the beginning and it was draining. Take over and talk shite for a while and let me listen for once! It’s a bit better these days but its still nice to sit back and listen rather than be the person doing all the talking.
One thing that did happen which was a bit annoying was that I stopped getting invited to things. I’m sure people had my best interest at heart but it was a bit shit to see events happening that I would once have been at. I stepped back from the social scene almost immediately after diagnosis and we moved down the country but it still would have been nice to have been included in what was going on even though I might not have been able to go. It’s still nice to be asked. So don’t do that to your friends, keep them in the loop with the social scene and invite them to things. You’re not annoying them by doing that, you’re annoying them by not doing it.
Be mindful of their energy
Again, the beginning is an exhausting time and everyone wants a piece of you. Most people think you’re going to die and they want to be there for you which is really nice but the energy just isn’t there to give to everyone. You need to conserve your energy to heal and giving it away is counterproductive so be mindful of that. If you didn’t used to ring the person every day, don’t start now. If you call for a visit, make the tea, don’t expect them to. And if you say you’re calling for an hour, let it be an hour. Visitors can stay too long and drain the energy. I have often had to go for a nap after people visited. Again, because the conversation was all about me and at times it felt like I was at an interview. I would try to sway the conversation but it would always come back to me. I’m a hot topic, what can I say!? It’s exhausting though, so be mindful not to ask too many questions. You can ask questions of course, but I’ve been in situations where I felt like I was on a rapid fire quiz show with all the questions coming one after another. Exhausting and unfair.
So what can you do?
1. Inform yourself of the illness instead of asking them to explain. It’s much nicer to have a conversation about it with someone that knows a bit about it rather than starting from scratch every time.
2. If you’re visiting, look after yourself. Make the tea, maybe bring food or snacks or even better, dinner – very helpful. Play with the baby, walk the dog, feed the cat, heck even empty the dishwasher or rub the hoover around the floor! You won’t be asked to do it but it will be so appreciated. Life goes on, dishes get dirty, dogs get antsy, cats need to be fed, babies need entertaining but the energy might not be there to do it. So help out if you can.
3. If you want to help but feel useless, a small gesture goes a long way. Some of the most helpful and thoughtful things people have done for me are:
- Sending well wishes, a thoughtful card, a prayer card, a prayer medal, light a candle, have a mass said. No matter what you believe religion wise, well wishes and good intentions are all the same energy and they go a long way in letting someone know you care.
- Sending emails/texts to let them know you’re thinking of them and if there’s anything you can do, let them know. It is the most simple message, it doesn’t require a reply and isn’t a conversation opener. Questions at this time are hard, just say hi and you’re thinking of them. It is enough.
- If you want to go a step further, here are some really useful things people bought for me or sent me that I loved… books on healing, fruit hamper, pyjamas, organic food treats, organic skincare, voucher for massage/healing treatment/seaweed bath, healthfood shop items, healing crystals, holy wood, essential oils, practical bits and pieces.
4. Provide comic relief, we need a laugh at what can be a very serious and sometimes miserable time. A funny youtube video, a meme or GIF in a text, a trip to the cinema or a comedy show or a suggestion of a funny movie or TV show you’ve seen lately have all been things I have welcomed at various times.
What not to do
Judging someones decisions at a difficult time is unhelpful. It is hard to make these decisions in the first place and when you hear someone disapproves, it can be very damaging. It can cause you to question yourself, or worse, question whether the person really supports you. Support is what is needed here, not judgement. Trust that the person knows whats best for them. If they ask your advice in what you think they should do, by all means weigh in. But if not, you haven’t been in this position and if you were, I guarantee you wouldn’t know what to do. It’s very easy to look in from the outside and think you know best.
One thing that has really irritated me was when people sent me ‘miracle cure’ articles. I don’t mind people sending me useful information but I’ve lost count of the amount of times I’ve been sent articles which were complete nonsense that the person obviously didn’t read. I have wasted time reading through them only to find they were useless and with no scientific basis. I know people mean well but at least read it first to see if it’s any use! I know you want to help and help is appreciated but make sure the article is actually helpful!
There ends my tips for today. Harsh but true to form! No holding back on this one eh? I just want to say again that all this is what happened for me in the beginning, I don’t feel like this now. Well that’s not strictly true, I still get tired from having visitors but that’s not to say I don’t want to see people. So don’t be afraid to ring me or text me or visit. I’m better able for people now but if you know someone who has just been diagnosed, this might give an insight into what it can be like in the beginning. It is chaotic. Try to ease the stress instead of adding to it.
P.S, I agonised for months on how to create a balance with giving my energy and protecting it, I struggled with saying no to people and things. I failed at times but I feel more balanced now and I think that is why I am sharing this information. I had a similar piece written a few months ago but it didn’t feel right to put it out there. If you have ever been through something similar, I’d love to hear if this resonates with you? Comment below and let me know!