Over the years that I’ve been writing this blog, many people have got in touch to ask me questions about their own chronic pain diagnosis. They often ask questions like, “what are the things I should do to make it easier?” or “what should I do when people don’t believe me?” They’ve asked about how to balance work, which medications to try and how to find support groups. Ultimately, what they’re asking is: how do you cope?
Well, anyone who’s had a chronic pain condition for a significant period of time knows there is no single answer to that and none of us have completely cracked it, but, I thought it would be useful to share the main things I’ve learnt over the last eight years with a few of my favourite blog posts to go to for further reading.
#1 – Be patient
There is no quick fix, and this will take time. I know it’s not the first thing you want to read, but the sooner you can accept that it’s a slow process and you need to be patient, the easier it will be. There will be multiple appointments, multiple painkillers and a lot of trial and error. There will be days you’ll sob your heart out because of the frustration, there will be days you’ll feel like you climbed Everest but no one will high-five you because all you actually did was make your bed, and there will be days when you live like ‘normal’ with only a small level of pain. It will get easier, and over time you will learn what coping means for you. Until then, take your time, do your research and learn to listen to your body.
#2 – It gets better
Trust me, it gets better. Coping with pain and fatigue and invisible illness is always going to be tough, but at some point you will learn to accept and make peace with the fact that there are some things you just can’t do any more. You’ll also discover new things that you would never have previously done, you’ll take on new challenges you never would have thought possible, you’ll make new friends, and you’ll learn to articulate your condition and your approach to coping with it. It all gets a lot easier, and the beginning of your journey is by far and away the worst bit. So hang tight – it gets easier.
#3 – Work out what helps you
It’s a slow process, but you need to learn how to best manage your health. We are all different and what works best for me may not work best for you. There will be days when you feel helpless and hopeless, and you’ll need to have a list of go-to things to pick yourself up. For me, heat is that thing. It doesn’t cure the pain, but it eases it and helps me to feel comforted. There’s no quick fix, but there are certainly things that help me to feel stronger. Make a list of what makes you stronger, and make sure you have those things close to you.
#4 – Your friendships will change
At some point people will stop asking if you’re okay. Soon your pain will become a part of who you are, and people won’t ask you about it every day. And that’s okay. Some people will stop inviting you to stuff, whilst others will become absolute angels. You’ll learn who you can and can’t talk to about it, you’ll learn how much to talk about it, and you’ll learn who to lean on when things are tough.
Not everyone needs to know you’re unwell; some of your friends or colleagues might never know it because it won’t always consume you. In the early days, it’s hard to imagine a time when you’re not talking about your health but it soon becomes a quiet part of you – just something in the background.
In the early days, surround yourself with people who love and support you and – most importantly – who believe you, because not everyone can believe something they can’t see. Look at people who are out there living life and doing amazing in things in spite of the challenges or disabilities they face, and let them inspire you. Things aren’t over, they’re just changing – and change isn’t always a bad thing.
#5 – Don’t rely on the doctors
One of the most difficult things about early diagnosis is that no one has any answers for you, at a time when that’s all you want. There’s no treatment plan, no cure, it’s just you and a repeat prescription. I often go back to the doctors when I’m in need of help and they so often disappoint me. I’ve recently realised that my treatment plan is up to me, and I’ll be sharing more on this soon. There’s no ‘right way’ of treating chronic pain and over time, you will learn to rely on yourself. You’ll create a treatment plan that works for you – one that looks at your diet, your exercise, your work, your social life, your mental health. Your doctor will never be able to provide this so just remember, they’re just one piece of a fairly complex puzzle.
Finally, and perhaps most importantly: Last year I created a fibromyalgia toolkit. It can be hard to know what to read and what to tell people, so I built this toolkit with my top ten links to help you talk, share and understand living with chronic pain. It’s made of articles I’ve written as well as some written by my spoonie peers, and is a good place to start when you’re first diagnosed.