Behind The Spoonie Society

How You Can Be A Better Spoonie Ally

How You Can Be A Better Spoonie Ally

Most of us will know someone – either a close friend, family member, or casual acquaintance – who lives with chronic pain or a chronic illness.


And if you’re paying attention, you’ll know that many people who do live with these kinds of conditions do their very best to appear ‘normal’ and not be a burden on others. 


But that doesn’t mean they’re not suffering. 


“As we know, chronic pain increases the stress hormones and neurochemicals in the brain and nervous system, resulting in effects on mood, thinking and behaviour,” says psychotherapist Emma Queen.


“Add to this the social impact of chronic pain - not going on with your normal daily functions can increase emotional stress, leading to sleep issues, fatigue, concentration issues and mood swings. 


“These increases can result in frustration leading to depression/anxiety - severely impacting mental health, and even making the pain worse.”

Most of us want to do what we can to help those who are struggling, especially the people we love. But sometimes, our best intentions can be misguided, and we can end up making them feel worse. 


“The impact can be high; the sufferer is already suffering psychical discomfort - others' comments do have an effect on the body and emotions too,” says Emma. 


“People with chronic pain often have low self-confidence and low self-esteem because of the length of time their condition has continued. I believe it's adding insult to injury to comment on someone's chronic pain.”


So, how can we best support our chronically ill friend or loved one? Here are a few things you should (and shouldn’t) do. 


 Practice empathy 


Emma says we should all keep the saying 'walk a mile in someone else's shoes' front of mind. “Not judging a chronic pain sufferer means practising empathy and understanding their challenges. Being mindful of their pain experience allows the person to feel 'seen' and a bit more understood.”


 Don’t question their authenticity 


Asking questions about someone’s condition is one thing, but questioning how it could possibly be that bad, or go on for that long, undermines their authenticity. Devaluing what someone either physically or emotionally feels leads to them feeling like they are making up their pain. “Not feeling believed can lead to frustration and anger on their end,” says Emma. 


 Validate and listen

Because chronic illness is not often visual, many people who have these conditions are afraid to talk about it. Let your chronically ill friend vent if they want to, and acknowledge what they’re going through. Avoid giving advice based on good intention, such as ‘get some rest’. “For people to say such a thing to someone who is a long-term sufferer of chronic pain makes them feel unheard. They perhaps already feel unheard because of what they are enduring - this lacks empathy” says Emma. 


 Don’t judge them by their appearance


 Saying ‘you don’t look like you’re in pain’ is not helpful to someone who is in pain! “For the majority of chronic pain sufferers, their pain is out of sight,” says Emma. 

But it’s certainly not out of mind. “Their pain should not be treated lightly; saying this comment belittles their physical and emotional feelings. The person saying this may be trying to give them a compliment; it also implies someone is faking it.”


Avoid talking about those worse off 

Pain is not a competitive sport. Reminding chronically ill people that there is always someone worse off than them belittles the validity of what they are feeling physically and emotionally. “They feel misunderstood and unseen by this comment when they need compassion!”.

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