Learning to managing chronic pain without any support.

Learning to managing chronic pain without any support.

My pain story is long and vast. It spans years of my life, it’s complicated, and difficult. One thing is the sure, I didn’t have much help growing up dealing with chronic unrelenting pain. Most of my family thought I was lying, over exaggerating, and the word psychosomatic was blonde about like candy.

As is the story of my life, I adapted. I went from being a kid with pain, to an adult with pain and I dealt with it all without family support. If they were to read this they’d argue, say they helped, and undoubtedly would tell me that I wouldn’t have gotten to where I am without them. That’s bullshit.

I got through over nine years of pain without support. I have a feeling that the only reason they believe me now it Is because the medical profession taking me seriously, I’m self-employed, and they can make other people feel sorry for themselves. By that I mean they can tell people my story and they will feel sorry for them, more so than me and I’m going through it. Fun times.

As you may have guessed, I don’t have a great relationship with my family – though they’d disagree.  It’s not the typical relationship – when people tell you ‘everyone’s family is like that’, no. No they’re not. Thanks to the Gent I’ve realised that definitely is the case. And growing up my childhood was bad – or shitty, as I like to call it in therapy. What really stands out is the lack of support I had medically. Sure, they eventually took me to appointments, because they had to, because the school got involved occasionally.

Looking back, and I’m in one of those moods because I had to go home yesterday to pick up some childhood relics, I realise I developed coping mechanisms to deal with being alone, in pain, and doubted. There was no one to tell me the doctors were wrong and that it wasn’t only my head.

Learning to managing chronic pain without any support.

Know that you can speak up for yourself at the doctors.

This one is the hardest points on this list. If your parents are anything like mine, they will constantly attempt to talk for you, and have done so for years –  especially to medical professionals. Heck, even as an adult my parents talk over me when I’m trying to convey to the doctor my story. I live with it, I know what’s going on, and they have no clue. 

Learning to speak up to yourself when you’re faced with an authority figure whose opinion dictates your entire medical life is terrifying. It’s also a thing called white coat syndrome.

My advice, write a letter to the doctor with a list of your symptoms, how long they’ve been going on, what makes it better or worse. Underneath a coherent letter, make bullet points of the main information you want to convey. 

Become your own advocate.

This one doesn’t just relate to doctors, though it ties in well. 

No matter the age becoming your own advocate is hard lesson to learn, but it’s an important one. No one else knows what you feel day in day out, no one else no one knows the intricacies of your symptoms apart from you. You have to become your own advocate because no one else is going to do that job for you. 

Find an online community.

There are thousands of people living with chronic pain in different parts of the world. Find a like-minded community of people to share your story with, and it will help you to feel less alone, and help you to deal with the realities of constant chronic pain.

Plans, plan, plan!

Prepare as much as possible for as many different situations as possible. Flares can happen any time, so it’s best to keep supplies handy. If you’re out carry emergency supplies with you, like painkillers, fans, and water. If you’re in, make sure you carry your phone with you as often as you can, and make sure it’s charged just in case you need extra help. 

Look out for new hobbies.

It is essential that you have hobbies to take your mind off the pain. If you don’t then there’s the possibility that you can spend a lot of your time thinking about the pain. 

Find a therapist.

It is vital that you look after your mental health, especially when you’re living with chronic pain.  Finding a therapist will not only give you someone to talk to an irregular basis, it will help you process your pain more. chronic pain is a constant grieving process. Every flair that happens knocks you back, and then you have to figure out how to live your life again. A therapist can help you, I highly recommend finding someone your compatible with – So don’t worry if the first of second person you speak to doesn’t feel right. 

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This isn’t a comprehensive list of everything you can do to manage chronic pain without any support system, but it is a start. Back in the day I started out talking to people on support forums, They helped me to feel less alone. I then moved on to learning new hobbies, journalling, and keeping track of what made my pain better or worse.

Learning to manage chronic pain without any support takes time, however, it is achievable even though it’s difficult. 

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