What I’ve learned as a 26-year-old living with chronic pain

What I've learned as a 26-year-old living with chronic pain

This year has been the hardest of my life so far as I’ve had to face my biggest challenge yet, being diagnosed with Rheumatoid Arthritis.

A few months ago, my feet began to hurt. At first, I thought that it was just from standing a lot for work, but then it just wouldn’t go away and continued to get worse. For weeks. The day the pain spread to my hands I knew something was wrong. But it was when it spread to the rest of my body – my shoulders, elbows, knees and ankles – that I panicked. What was happening to me? All of a sudden everything hurt, all the time. Sitting, standing, walking. At first lying down was my only relief, until the pain got so bad every joint would throb no matter how comfortable I was.

Within two months I had gone from being a personal trainer, strong and fit, with a passion for hanging upside down or balancing on my hands, to not being able to dress myself, cut my own food or tie my shoelaces.

Everything had changed. 

Rheumatoid Arthritis is an autoimmune disease, causing inflammation and swelling in the joints which is extremely painful. This is the third autoimmune condition I’ve been diagnosed with (I also have Coeliac disease and Berger’s disease). That’s the unfortunate thing with autoimmune conditions, once you have one you are more likely to develop another.

RA is called the silent illness, because we don’t look sick. But every day is a constant struggle as we try to move through life in constant pain. It’s a dark and isolating place to be. On top of the physical pain there is the fear that your body is changing and it’s completely out of your control, and the realisation that there are some things you will never be able to do again. Then there are the side effects from the strong medications you are on; the migraines, fatigue, fevers, muscle pains, mood swings, insomnia, cramps, blurred vision.

A generally very positive person, I’m not going to lie, these last few months have really challenged me. I’ve been in some dark places. I’ve felt sorry for myself, I’ve spent whole days in bed, I’ve used alcohol to numb the pain. It has been a process to come to terms with these changes taking over my body. But every day I wake up and fight this battle again, getting stronger each time as I learn to accept the hand I’ve been dealt.

These are the lessons I have learnt from living with chronic pain:

  • There is a time and a place for modern medicine. While I am a huge advocate for natural health, we are so lucky to live in a modern world with amazing pharmaceuticals. I wish I could tell an inspirational story about how I rejected the drugs and decided to cure myself naturally, but it is so far from the truth. After the pain that I was feeling, when they offered me a chance to have even half of it taken away by a steroid injection, even after listing the plethora of potential side effects, I jumped at it without hesitating for a second. As the kind of person who would never even take paracetemol if I had a headache, this was a tough pill to swallow. Sometimes your values will be challenged as your circumstances change.
  • It’s OK to ask for help. I have always been stubbornly independent. Never wanting to rely on anyone, priding myself on being completely self-sufficient. I’d never even let anyone open a jar for me. Oh how the mighty have fallen! I’ve had no choice but to put all of my pride aside as I began to require assistance for almost everything. Now I understand the importance of a support network, and the gratitude that comes with having people you love around you who would do anything to help you. Love and appreciate these people always, don’t push them away with your ego.
  • Self-care isn’t an option, it is a necessity. I used to race through life, with clients morning and evening, full-time PR work during the day, pole, yoga travel, writing, friends, family. I used to feel that any moment I wasn’t productive was wasted. I even used to meditate with the sole purpose of being more productive! When I was first diagnosed I got so frustrated with myself for not being able to do as much as I used to. Now I have learnt to accept my situation and I understand that I need to look after myself. I now put myself first and listen to my body. If I need to spend an afternoon in bed, that’s what I do and it’s OK. If I need to turn away a potential new client because I don’t have the time or energy, that’s fine too. You can’t do it all. Make yourself a priority. Turns out resting is pretty f*cking awesome.
  • Positive thinking is not the answer. Instagram mantras like “positive mind, positive life,” “I’m in charge of how I feel and today I’m choosing happiness,” and “wake up and be awesome,” may seem inspirational, but life is not so simple. While I see a huge difference in my pain when I am in a good mood versus when I’m in a bad mood, and I’m a big believer in the mind/body connection, it only goes so far. Telling someone like me to “think positive” or that the reason this happened to me is that I poisoned myself with negative thoughts, is insulting and so far from the truth. Positive mantras from social media influencers are just another way of shaming the average person, as it’s not good enough to just eat well and exercise, you have to be happy and think positive thoughts all the time too. Sometimes you wake up feeling like shit. You have a shit day. The people around you are being shitty. And that’s fine. Then you go to bed and hope that tomorrow will be different. It’s a new day.
  • Learn to distinguish what matters. Nothing like being in pain all the time to help put things in perspective. Missed the bus? Get the next one. A friend cancelled plans? We’ll reschedule. Boss being annoying? It’s just a job. This year I’ve become acutely aware of just how much time I’ve wasted in the past worrying about things that don’t matter. Don’t let the little things get you down. While I could sink into feeling sorry for myself because of what has happened, instead my circumstances have forced me to appreciate all of the amazing things I have in my life. Instead of focusing on what I’m no longer able to do, I’m grateful for all of the many things I’m still capable of.
  • Your struggles make you stronger. This one is a cliché but I can’t even explain how true this rings right now. Even when I’m feeling my worst, I’m constantly realising what I’m capable of. Every time I conquer yet another day of pain, I remind myself that I can get through this. And if I can get through this, I can get through anything.

So what now? I’ve taken a step back from personal training as I’m just not physically capable at the moment, however, I’m still wellness coaching and have a new emphasis on meditation. I don’t know how I would have survived these last few months without my meditation practice. It has allowed me to stay grounded, to see through my pain, to remain grateful, and to monitor my moods and stop me from slipping into dark places. It has kept me positive and focused, and helped me stop anxiety from taking over (I almost always win!).

I recently completed a survey on living with arthritis for research purposes, for the Rheumatology department to understand how it affects the daily lives of sufferers. I nearly broke down as I came across a question: “Do you ever feel like you would be better off dead?”. My answer was no. No matter how hard things were, I always knew I could push through and that things would get better. But it broke my heart to think that other people might not feel this way. It saddens me that so many people who have a similar condition don’t have the appropriate tools to help them cope. This is how I knew I had to share my tools with anyone who needs them.

I’m shortly going to be releasing a series of guided meditations and workshops for anyone who has ever thought about learning to meditate, and I will have dedicated series’ for those suffering from chronic pain. All completely free with the sole purpose of sharing these tools with as many people as possible.

But it’s not just for people going through a hard time. We need to work on our wellbeing at the best of times, so that when challenges come along we are able to handle them. Don’t wait until you are faced with a catastrophe to take control of your happiness. It’s not that I’m trying to prepare you for the worst – I don’t want you to be going along waiting for something bad to happen – just that if it does you’ll know how to bounce back.

If you know of anyone going through a hard time or living with chronic pain, please send them my way. Chronic pain can be extremely isolating and it’s really important that we support each other.

If you are suffering from RA or have any questions about the disease, feel free to get in touch. I’d love to hear from you about your own personal experience and coping mechanisms.