Nobody, least of all me, is disputing how hard it is to live with, and be around someone with a chronic (ergo forever) health problem.
After all, the adjustment is hard enough on us spoonies ourselves after diagnosis, and we get away without actually having to watch ourselves in pain. That is a job I would never wish on anyone, and yet it’s the job my family have. Knowing this will be a problem for the rest of our lives, wondering if one day the good days will dissolve all together and all we’re left with is immeasurable pain and depression.
The thing about pain is, it ages you. Whether physical or mental, it grinds you down, it sucks the joy from your life and makes you bitter. Acceptance is a nice word, but nobody really accepts being in pain every day. We are born fighters, naturally trying to recover, to fight our way back to better health and happier times. Yet so often we feel like giving up. When I thought about writing this blog I wondered how I was going to talk about what I need without sounding like an ungrateful egomaniac. I realised though, it doesn’t matter how I sound, I need what I need. We all need things, and it doesn’t make you a failure if you need support when you break your leg, so why do I feel like a failure asking for support for an incurable illness?
1. The first and most valuable thing anyone who orbits my life can do, is research. Do your homework, learn about what it is I live with. Not only will it help you understand, it will take some of the pressure off of me to explain it to you. I want to help you understand but sometimes talking about it is painful.
2. Once you’ve looked up the condition(s) keeping your eyes open for news and ways to continue to support me. Please don’t look up how to cure my illness, because if you’ve done your research you’ll already know it’s incurable, but I appreciate every effort you make to learn about the kind of things that can support me in leading a normal life.
3. Make allowances for me. I don’t mean for example, if I’m not very nice to you. Nobody should have to make allowances for other people’s shitty behaviour. What I mean is, when I cancel last minute, or I forget things please don’t take it personally. I want to be there, if I agreed to come when you asked me to it’s because I absolutely wanted to. So if I’m not there on the day, it’s because I physically can’t be. Know that if I’m sounding off about how shit I feel, it’s because I do indeed feel shit, and know I’m always here for you too, even if I can’t always be there in person, I will also do everything in my power to support you in ways I am able.
4. Don’t forget about me. You have probably learned by now that the night’s out we used to have aren’t that feasible anymore. So invite me for lunch instead, come round for coffee, let’s go for a walk. I still want to see you. I still want to socialise, I just might sometimes have to do it a little differently.
5. When I post awareness campaigns or share posts about my conditions on social media, don’t scroll past with an eye roll. Don’t judge me for trying to get the support and understanding I need. Even if you don’t read them all the way through, give them a like, show me that you’re remotely interested in what’s going on in my life. Because for the most part, my illness is my life. No matter, how much I wish it wasn’t. My advocacy is the only thing that makes my illness hold any value, the idea that I might be able to help people is so very, very important to me. When you’re chronically ill, the likelihood of it having taken years to get accurate diagnoses is highly probably. So when we refer to our conditions by their relative terms it’s not as a badge of honour, it’s as part of our acceptance in finally knowing what it is that’s wrong with us.
6. Don’t compare me to other people. Your sister’s boyfriend’s cousin may have the same illness, but she isn’t me. She might work full time and be mildly affected or she might be in a wheelchair. Our journeys aren’t the same because we aren’t the same person. By all means share her success, but please don’t assume because I can do things she can’t or vice versa that I suffer less, or more. Treat us uniquely, because we are unique. It’s not a competition, you wouldn’t say to two people with cancer that one of them must have it worse because their hair has fallen out. You’d know it might be because they are having different treatment, or because their cancer might be more invasive. It’s the same for us with other illnesses too.
7. Believe me. Believe me when I tell you I’m having a bad day, or that I’m struggling. Know that if I’ve summoned up courage to open up to you or ask for support, it’s because I need it. Genuinely. It’s not because I just fancy a pity party. I don’t want your sympathy, I want your empathy. Nobody chooses this life. Don’t tell me I can get better if I do XY or Z, because I’ve probably tried it already, and secondly it makes me feel as though your questioning my integrity.
8. Know that I am still me. I still want to hear about your life, your escapades and your dating dilemmas. I may not be doing the same things you’re doing, but I’m still your friend. I still want in on the latest gossip and I still want you to feel like you can come to me.
9. Understand that my symptoms change, sometimes daily. If I omitted to mention something to you last time we spoke it’s probably because I didn’t know about it/ have it or understand it, then. Like with all health conditions knowledge, side effects and treatments are being updated all the time. Our body is usually the first to update us on the changes.
10. Don’t avoid conversations about my disability. Sometimes I want and need to talk about it. You won’t offend me by bringing it up, it’s not a taboo subject. Ignoring it all together it more offensive. Saying things like ‘at least you don’t have’ is not perspective it’s hurtful.
I am very lucky that I have a supportive family. I have a very helpful husband and an amazing mum and sister who always support me in any ways they are able. We support each other. We do so by being open with each other. I am as supportive of them as they are of me, it’s not one sided just because I’m sick. We are able to move forward as a family because we talk about our issues and support each other accordingly. The same applies to my friends. I am blessed with friends who are empathetic and patient. They make allowances for me because they know I would do the same for them. I wrote this because it’s something I wished I’d had the courage to say early in my diagnosis. I wish I could of then explained what it was I needed from people. If I was able to explain better to people what I was seeking it may have prevented harboured resentment and passive aggressive misfires. I hope by sharing this I will help more people gain the confidence necessary to explain their needs.
You can also read this blog on House21 UK