In this episode I’m sharing my pain journey, from chronic headaches and period pain to the joint pain I’m currently going through. I also share five learnings I’ve had from these experiences. I’m no doctor and there’s no medical advice here, just a space to feel heard and connected.
Listen wherever you get your podcasts or here:
Links and further reading
- Seedling Ep 32. We need to talk about painful sex
- Painful sex: it’s time to speak up
- Seedling Ep 55. Why I’m taking a month off my business
- Curable app
- ‘The Way Out’ by Alan Gordon
- Suzi Leach Instagram
- How long covid is turning out to be a feminist fight
- Is pain a feminist issue?
Today I wanted to share a little more about my pain journey, from chronic headaches, period pain to the ongoing joint pain I’m experiencing now. I’m not a medical professional or an expert, but I feel like I’ve learnt a lot about what it means to be in pain and I hope sharing my story and learnings can provide comfort to others going through something similar.
Hello you, how are you doing? I hope you’ve had a good couple of weeks, at the time of recording the UK is going through a heatwave and it is intense, especially when you live in a top floor flat! But it is lovely to feel the sun on your skin and get that dose of vitamin D.
Also at the time of recording, I’ve just finished my last private Pilates class. This is something I started earlier in the summer to help with joint pain and it’s been a brilliant way to learn the basics and get that devoted attention. I’ll definitely be keeping up with Pilates, but I’ll be looking at online videos and group classes to make it a little more financially sustainable.
Coming to the end of my private classes however got me thinking about my joint pain, how it is now compared to earlier this year and then I went down a bit of a rabbit hole in my mind thinking about other types of pain I’ve been through, so I thought it may be helpful to share my pain journey here. I’ve found it really comforting hearing other people’s stories, knowing I’m not alone and that this shit is really hard and it’s OK to struggle.
As I mentioned in the intro, I’m not a doctor and this episode isn’t going to contain any advice. I’ll just be talking about my experiences and some learnings. I also know in the grand scheme of things, I’ve been very lucky. Lots of people have dealt with chronic pain their entire lives and what I’ve experienced is a drop in the ocean in comparison, but I also think it’s important for us not to compare. Everyone’s journey is valid and there shouldn’t be any competition of who’s had it worse.
So with all that, let’s get into it. My first experience of chronic pain was as a kid, when I was in primary and secondary school where I had pretty much daily headaches and occasional migraines. I’ll never forget my first migraine, I honestly thought something was really wrong as the pain was so intense. Thankfully as I’ve gotten older, I haven’t continued having typical migraines, just the odd visual migraine – which is when your vision is the primary thing affected and you then get a headache after, but not as intense as a regular migraine.
I remember the tension headaches really affecting me and having repeated visits to the doctors who told me I was just a “headache-y person”. After breaking down in tears during one visit, I was prescribed some medication which took the edge off. I was on that medication for years until I was recommended to come off them as they were addictive and not really recommended for long-term use, which I kinda wish someone had told me! But I did come off them fine and by then my headaches had naturally reduced.
These days I am still quite headache prone and it’s often my body’s go-to response if something isn’t quite right, if I’m stressed, if I’ve not slept enough, if I’ve slept too much, if I haven’t eaten or drunk enough, etc. etc. But they aren’t daily and they rarely feel so intense that they affect my day-to-day life, so they feel manageable.
The next time I really experienced debilitating pain was in my early twenties when my period pain became really intense. The moment that sticks in my mind was when I was working at a shoe shop and the pain got so bad I was sick and I had to lie in the foetal position on the floor of the stockroom. A very kind security guard from the mall went to get me painkillers and gave them to me as I was writhing around on the floor – he looked pretty spooked! And I was too. I was debating whether or not to go to A&E as I’d never felt pain this bad and I was convinced something was terribly wrong, but after getting home and lying down, the painkillers helped and I recovered.
I’ve not had an experience like that since thankfully, but the pain I get each month is pretty bad and just exhausting. I’ve had scans to check for endometriosis and nothing was found so it’s just become kind of normalised for me, which bothers me, but I’m also not really sure what else to do. I know it could be a lot worse, but it is just so tiring knowing you’re going to be in a lot of pain for a few days every month. I have gotten better at taking time off when it gets really bad though and I’m always honest about it with my manager and colleagues.
Another related pain I experience is pain during sex. I have actually recorded a whole episode on this, it’s episode 32 so I’ll leave a link to that in the show-notes and I’ll also include a link to an article I’ve written about the subject for Happiful. It’s a big topic and one I think we need to talk about more, so I hope that by sharing my experience I can encourage others to speak out, so yeah – definitely listen to that episode if you want to hear more on that.
And that brings us to December 2021 when I caught covid for the second time and started dealing with joint pain. If you listened to episode 55 you’ll know more about this but essentially I’ve had pain in my joints every day this year and it’s been tough. I will say though that it feels like it’s gradually getting better, swimming and Pilates helps, as does distracting myself and getting myself out and about.
So that’s a rundown of my journey so far, and here are some of my learnings from these experiences:
Number one – I’ve learnt to really listen to my body. Pain is our body’s way of saying something is wrong, whether that’s physical or mental. So when I feel pain now I always try to ask myself what I need. For example, if I notice a headache coming on, I ask ‘do I need to drink more water?’, ‘do I need an early night?’, ‘do I need to reduce my stress levels?’ and so on. In that way I can bring myself to feel a sliver of gratitude for pain, for the fact that this is my body’s way of speaking to me. My body awareness feels the best it’s ever been, and that’s been invaluable.
Learning number two is that being honest about it is key. It’s really tempting to gloss over pain, to say “I’m fine” when you’re not. Especially when you’re experiencing chronic pain. People can struggle to know what to say when ‘getting better’ isn’t easy or even possible in some cases. We humans naturally want to fix problems so I do understand how difficult it must be to ask someone ‘how’s your pain?’ day after day for the answer to always be ‘no change’. I’ve almost wanted to lie at times and say ‘all better!’ just to please the asker, but denying your truth and suppressing your feelings is not helpful for anyone. So I always try to be honest, whether that’s saying ‘yep, still in pain’ or taking sick days when I need it.
Learning number three is that my emotions around it are like a rollercoaster. Some days I can totally cope, it doesn’t seem so bad and I can almost forget about it. Other days, particularly when multiple pains are piled on top of eachother, I just want to collapse, cry and say I can’t do it. Pain is exhausting in so many ways and it can really take a toll on your mental health. Whenever I’m having a bad day I just try to show myself compassion, allowing myself to feel the anger, frustration and sadness that comes with the pain. Mindfulness and meditation helps, as does distraction and trying to focus my thoughts elsewhere.
Learning number four is that pain isn’t just physical. This is a more recent learning and I have to thank the app I’m using at the moment for this. The app is called curable and it’s all about the fact that pain has a biopsychosocial model. This means it isn’t just affected by the physical body, but also your psychological state and your social environment.
I also read ‘The Way Out’ by Alan Gordon which explains this and neuroplastic pain, which is when our brain essentially creates pain as a learnt reaction to feeling unsafe, which was super interesting. I read this after a recommendation from the lovely Suzi Leach who I highly recommend following for self-compassion and chronic illness recovery content. She is @trustandbloom_ on Instagram and I’ll leave her details in the show-notes. All of this is helping me focus on my mindset and how I can ease pain from all angels!
And finally, I’ve learnt that I know myself best. I’ve been told lots of things by doctors, some of it helpful, some of it not so helpful, but ultimately, I know when something isn’t right and I’m glad I have continued pushing for support – whether it was asking for medication for my headaches, going to the doctors about painful periods and painful sex, to seeking a rheumatologist appointment for my joint pain. Advocating for yourself is tough, and when you’re already exhausted by pain it can feel impossible.
It shouldn’t be this way and I think a lot needs to change in the medical community when it comes to treating pain, especially when it comes to people with uteruses experiencing pain. The treatment of pain and its links to feminism is a whole other topic and I’ll leave some further reading on this in the show-notes, but it’s eye opening.
It also takes a huge amount of privilege to advocate and support yourself. You need the time and flexibility to attend appointments and you may need wealth privilege to seek private support (which feels like the only option sometimes) and do the things that will help you. I’ve spent a lot of money on private support, Pilates lessons and swimming this year and while it’s all been worth it, it’s made me realise how lucky I have been to be able to afford these things.
So yes, in conclusion – this stuff is really fucking hard and the system needs a lot of work. BUT, you are not alone. Connecting with others who get it has been really helpful for me, and having a whole heap of self-compassion and grace that I can’t always do things at the same level as others, and that’s OK. But it is definitely a journey, and one I’m still on and still learning from.
Sending lots of love to anyone listening who’s currently in pain, you are amazing and valid. I’ll be back in a couple of weeks, until then, do take care.
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