I’m lucky. I have a large family around me, all within 20 miles of where I live. But when it comes to talking about my chronic pain and illness, I find myself drawing comfort from those I have never met. In this post, I explore why.
You have to experience it to understand
I have a loving family, but over this dark period of my life, this last year where it feels like it has been one thing after another. There has been something that has surprised me above all else since deciding to go public with my story. That something is the kindness and support of strangers.
I have been amazed at the support I have received from people all around the globe who I never have, and most likely never will meet. They understand my pain and suffering more than any family member – and I’ve only been writing about this since late 2019.
It’s no slight on my family. Although they have been there since I was 12 years old in a wheelchair and spent goodness knows how many days beside my hospital bed. You simply cannot understand chronic pain unless you’ve experienced it.
At last count, I had over 1500 people regularly following my ramblings via social media and mailing list. That figure alone amazes me. What I find more staggering is how I’ve stumbled upon a world I never knew existed, despite living with arthritis for over 25 years. A world where strangers genuinely care for my struggle; support me through the bad times and celebrate my small wins.
The connection? They experience and understand chronic pain.
I said to somebody recently that arthritis hurts far more people than just the person taking the pills, and the same applies to chronic pain.
Every time I am a zombie because I got no sleep the night before, my wife and son suffer. Every time the depression from chronic pain kicks in and I go ‘off the grid’ for a few weeks, my siblings and friends suffer. Each time I lose my temper because my patience with pain has expired, my parents or work colleagues suffer.
It’s not fair and triggers a cycle of guilt, self-blame and loathing that comes second only to the pain and makes talking to those people you care about harder.
People in constant pain are often at the end of their tether, shattered from lack of sleep or fed up with not being able to do what they love. Throw family members and years of previous history into that tinderbox and watch the fireworks fly!
Family and friends want to support, of course, they do, but they will never understand. For example, how many times have you tried to open up to someone only for them to say the dreaded ‘it’s like when I…’ and they reel off a story about that time they had a bad back for a few days once? Your pain is temporary; mine is permanent!
The ‘you look well’ paradigm
Worse still, the infuriatingly common double-entendre of ‘you look well‘.
It’s something that makes me smile uncomfortably or brings me out in a cold sweat depending on who offered the opinion, for example:
- An old friend – probably just being nice and doesn’t know what else to say
- A particularly unsupportive family member or work colleague – suddenly you are riddled with paranoid thoughts of ‘do they think I’m faking it or something?’ or judgements of ‘why were you off work for weeks but look fine?’
Regardless of good or ill intentions, it makes a huge difference depending on who said it—coming from somebody else who also suffers from chronic pain or illness? Well, they quite simply wouldn’t say it. They know it’s a throwaway comment or icebreaker such as talking about the weather but, more importantly, they understand how anxiety-inducing such a thing can be.
When speaking with somebody who also suffers, the conversation is more likely to be around ‘how are you doing?’, ‘what kind of pain day is it today’ or the so often overlooked by loved ones; the holy grail of icebreakers for the chronically ill: ‘can I help you with anything?’. Empathetic, unintrusive, straightforward.
Loved ones can have the best intentions in the world and can help in many ways to support us folks dealing with a chronic illness. Still, they will never be able to appreciate the relentless, energy-sapping, claustrophobic agonising ‘production line of pain’ that the likes of arthritis can bring.
A support network in strangers
Talking to strangers or acquaintances who have experience of chronic pain, who have, at one time or another, been through what you are going through right now, just get it. You don’t need to explain, justify, try and compare it to something they may have felt or defend why pain causes so many secondary issues like fatigue or cancelled plans.
There’s no baggage with an online community comprising of those with similar conditions as yours. No history or politics like we get with families. There is also more decorum. No ‘man up’s’, ‘pull yourself together’s’ or insensitive emotion which you may get when having these conversations with family.
People may be passionate about the subject but there isn’t that dynamic you may get between a father and son or brother and sister when trying to discuss your struggles.
A place to talk
After experiencing this overwhelming swell of support from my Instagram and Facebook followers and the emails I now receive daily, I started looking around at what was available for people in chronic pain to support one another. To offer an outlet for people to connect with others that understand.
I spoke to some well-known charities and people in the community, and it was clear that outside of your traditional physical support groups that meet in a village hall once a month, there wasn’t anything in terms of an alternative, especially for younger people.
I, therefore, decided to set up our Arthritis and Autoimmune Support Group on Facebook. It’s only a couple of months old, but we already have well over 100 members, all asking questions, helping each other and sharing their experiences.
It’s been great to see new members drop in and ask about people’s experience with medications before they commence treatment. Or offer their tips for what they do to help with specific issues and generally be an ear for when we all inevitably have that low day.
If you’re looking to talk to people that ‘just get it’, I recommend you check it out and get involved in a fantastic and fast-growing community.
What our members say
We asked our Facebook Group members why they seek support from those who have experienced chronic pain, as opposed to loved ones. This is what they had to say:
It’s so hard to explain but the sense of understanding makes such a big difference. It’s massive, honestly unexplainable. Even with someone you’ve never spoken to before it’s like you know them, it’s a connection. Connection of empathy.Ali Daggett, member and runs the Under Young Skin RA blog
I love the phrase ‘connection of empathy’ Ali uses here. It sums it up perfectly. My experience when dealing with loved ones such as family members is one of sympathy or an unwillingness to accept the situation. Rarely one of an empathetic nature.
Most loved ones have never had Chronic pain or felt anything near it… To talk to another person who understands enables me to vent my anger, frustration and hurt, there’s an immediate connection and understanding and further support of encouragement to talk.Dawn Helmore – member
Dawn has a fascinating approach. She is mindful of loved ones being upset by her suffering so chooses to discuss the daily challenges and frustrations of her health condition with others in a similar position, to protect those around her—such a considerate strategy.
A thank you
I want to draw this piece to a close by taking a moment to say thank you to everybody who has supported me over this weird and unsettling year. Whether you simply supported my writing by taking the time to read or share my work, sent heartwarming messages during times when I was struggling or the unexpected emails that simply reach out to say ‘keep up the good work’.
Those random acts of kindness make a huge difference to someone’s day when they’re in pain and I now consider you a key part of my support network.
How you can help
If you’re a friend or family member of somebody living with chronic pain and are looking for ways to support them, why don’t you start with these simple tips:
- Tell them they are doing ok
- Try and help them focus on tomorrow rather than looking back on the past/what they used to be able to do
- Reassure them that there will be better days
- Ask if there is anything you can help with – not everybody wants to ask for help, but it doesn’t mean they won’t accept it when offered. Either way, they will appreciate the sentiment
- Offer them a distraction – a walk, movie or something as simple as a cup of tea
- If or when they are ready to talk, listen, speak when they have finished offloading (there may be a lot bottled up) and unless it was a chronic pain experience, don’t try and reassure them by comparing your stories of injuries! 🙂
- If they are struggling to open up to you, recommend a support group such as ours or get them to talk to one of the well-known charities who run helplines for people to use in times of crisis. You can find some suggestions on my Resources Page.