What I didn’t realise before my accident and becoming sick is how complex illness can be. How draining it can. How it can impact all aspects of your life. You feel like you have just overcome one barrier and then something else drops on you. The world is full of quotes about breaking down walls and overcoming difficult times. But they don’t talk enough about how it can feel like wall after wall after wall. You fight so hard to get past a challenge and no sooner have you had time to breath then something else happens to you. With each knock it becomes more and more difficult to motivate yourself to try again because what is the point? Those around you don’t always understand what you are experiencing and that can mean that well meant advice can make things worse not better.
There is something that happens when you become sick or injured that people think suddenly giving unsolicited advice is okay. Heck I have had an Uber driver tell me that if I had only eaten this special sort of Indian butter then I wouldn’t have needed any surgeries…
I am not saying you can never share a nugget of wisdom with someone. But please think long and hard before you do. Remember to bare in mind that the disabled individual has probably done huge amounts of research on their own and spent hours talking to doctors and specialists. They likely will have already come across many of the suggestions and either implemented them or rejected them. You probably don’t know their illness better than they do.
However I have been given some wonderful pieces of wisdom from family and friends (both in person and my wee online family). In fact I need those around me to support me, guide me, research for me and more. I would be lost without my friends and family. But this isn’t a black or white issue. But I assume if you are reading this then you are someone who is interested in trying to do the right thing and how to support someone with chronic illness or perhaps you are like me and living with a disability.
I will admit it’s not easy to write this blog post and to get my angle right. As I am not saying never give people advice. Because I love to used my lives experience to give people an insight into processes or explain what they may be entitled to in terms of support or skills/management strategies that have helped me to cope. I also love hearing about other people’s lives experiences. Especially if they have had similar experiences to me. It makes me feel less alone. It is why I have a health Instagram page because being part of the chronic illness community has been so beneficial for me. But that’s a whole other blog post. In brief you need support around you and it’s okay to ask out for help. It does not make you weak. There are no medals for suffering in silence.
I can’t give a one size fits all rule. But one thing that I know from having talked to my family and friends is that it is hard to support someone with a chronic illness or disability. It can be really hard. Knowing when to give advice or when to just sit and listen is such a difficult thing to judge. You have to be patient with yourself. You can’t get things right all the time. For example maybe I have having a bad pain flare up day and you suggest going on a walk and I snap at you saying I can’t. You could not have known I was having a bad pain day and may have been making a suggestion that had helped several times before. Some days I am just in a really bad mood and whatever you say I’ll likely react badly to it. That doesn’t mean that what you wanted to offer may not be useful in the future, it just wasn’t the right time for it.
It is really helpful if you can offer something concrete. Don’t get me wrong people asking ‘how are you?’ ‘Is there anything I can do?’ ‘I am here for you.’ etc. are lovely and remind me I am not alone. But it puts the pressure on me to think what might be helpful which is sometimes quite difficult because you don’t always know yourself what you need. Particularly if I am going through a rough patch with my health there is just so much going on that things can become very overwhelming. So if you can offer something which I can then give a yes or no answer to that is just amazing. It gives my brain a break. For example ‘Do you want to meet up?’ ‘Do you want to FaceTime?’ ‘Do you want to watch a movie?’ ‘Can I get you anything at the shops?’ ‘Here are some film and tv series suggestions.’ ‘You can come and stay with me.’
The other thing I would recommend is to directly ask your disabled pal, when they are in a good place, what is helpful for them when they are struggling. If you ask in the moment of the struggle it can be so hard to think and know what you might find helpful. It can also feel too exhausting when you are struggling to try and explain your needs. So if you reach out to them when they are not struggling it will be so much easier for them to explain what is helpful and so you’ll be better able to support them. For example for me things that help are: Grounding techniques; My favourite inspirational quotes (it’s important you know the right ones); encouraging me to take small steps like standing up, leaving my bedroom, going to make a coffee; breathing techniques; writing down what I am feeling; try to get outside; remind me what I have already got through…I could go on. But when I am in crisis or a pain flare the likelihood is if you ask me how can I help I’ll just say “You can’t” or “I don’t know.”
Another thing that can give me a big boost is receiving snail mail. Of course face to face meetings are the best but for various reasons that is often not possible. So I really would encourage you to use snail mail sometimes. Why? It’s such a lovely and unexpected joy to get something in the boost. It gives you a physical reminder that people are thinking of you. I find that excitement of the process of opening envelopes and parcels makes me smile. When I am struggling the online world can become very overwhelming so I can cut myself off from if. Messages build up and you are under increasing pressure to reply. I feel like because I have been ‘active’ online and replied to one person then that means I have to reply to everyone. So sometimes it’s easier just to cut myself off. But if I get something in the post I can read it completely on my terms and it doesn’t lead to me getting lost in a deluge of social media. Plus so much is online now, especially since lockdown, that getting something in the mail does feel quite special.
Finally, don’t feel you have to ask when you see someone with crutches/bandages/braces etc. I know it might seem rude if a colleague walks into the office with what seems to be a new injury not to ask but trust me it isn’t. Obviously if its your best friend and you have met for coffee that is a little different or if you are a manager who needs to support their employees. But I would say 95% you don’t need to ask. I know often it feels like you really should ask or you will seem like you don’t care. But let me tell you why you shouldn’t. Firstly if you feel you should ask probably a lot of other people will have felt they should ask to. Once I was asked 20 times in one day what happened to me. Secondly, sometimes the events behind an injury are very traumatic and it can be quite triggering to always be reminded of the event. Thirdly, it can take a lot of courage to use mobility aids in public. I know I worry that everyone will be staring at me. So when people come up to speak to you about your visible disability it just reaffirms that your worries were valid. Finally, it might be the first time you have seen someone’s disability but that doesn’t mean the disability is new. It could be something they have struggled with for years but they are going through a pain flare that day. So the question ‘oh what happened to you’ is really rather complicated.
I know I have put those I care about through a lot. I am so grateful for all the help and support I have been given. Because in the end of the day sticking by people through thick and thin is what counts.
I have written a short poem about how it can feel living with a disability and how life can ware you down. But that doesn’t make you broken.
We talk about wars to be won
Walls to be overcome
As if there is a start and an end
Something easy to comprehend
If you try hard enough
If you are tough
You can rise
Like a Phoenix high into the sky
But there is a bit of the story people don’t say
A Phoenix does not have a final
It has countless revivals.
From the ashes it returns
Because in life you will get burnt.
But don’t let that stop you.
You are strong enough to fight through.
Again and again
Rise and fall
Rise and fall
It is hard I know
But in each battle you will grow
You might not see it
Things feel too hard a hit
How to go on
When it’s as if everything you had is gone?
Because you are worthy
Because you deserve it
You will get past this blip.
Then maybe another will come
Once again you will feel undone
But lift your head high
Give your all and try
You have survived all of your bad days so far.