[Image: Artful Agony]
Planning a night out is complex when you have a chronic condition, but seeing friends makes a huge difference to someone’s quality of life and mental health. If you want to plan something your spoonie friend can attend, here are a few tips.
1. Check for wheelchair accessibility, stairs and seating
If your friend is a wheelchair user then it’s obvious that your chosen venue should be wheelchair accessible. Don’t leave it to your friend to check this out – do it for them.
But spoonie friends who aren’t wheelchair users may still find some venues inaccessible. By the time I have dealt with stairs, for example, I am often ready to go home, and if I tried to stand up for the length of a gig, I’d faint.
2. Avoid air fresheners, perfume and aftershave and ask guests to
Plug-in ‘air fresheners’ give me a near-instant migraine and have been life-threatening for a friend with Mast Cell Activation Disorder (MCAD). I know others who struggle with aromatherapy oils too. Avoid plug-ins in your home and hanging air fresheners in your car, and open a window or use air conditioning (or a match) instead.
Similarly, your alluring personal fragrance is my headache. This gets worse when several people have splashed on conflicting aromas. Go easy on scents, or avoid completely. And never apply in public – particularly public transport. Ditto hairspray.
3. Check for other allergies and allergens
Potential allergy triggers are remarkably wide-ranging. Yes, it’s impossible to avoid *everything* that might cause reactions, but you can make yourself aware of friends’ allergies and tailor your event accordingly/ask questions of the venue first.
Some things I’ll flag to friends with chronic conditions include incense, vaping and damp venues (for mould allergies). These things can be as limiting for someone with mast cell issues as stairs are to someone with mobility issues.
If I’m having an event, I’ll check people’s dietary requirements and let people know if I’m using nuts (which I’ll obviously avoid if I know a friend has a nut allergy).
4. Avoid crowds, and don’t go out if you have a bug or virus
Crowds can be painful and/or overwhelming for many to navigate. I find outdoor events easier as people are more dispersed, but others may struggle with crowds whether indoors or out. I may desperately want to see friends, but if I have to be surrounded by strangers too, it takes a lot more spoons and is often too much to face.
Try to pick quieter venues without loud music and flashing lights and, ideally, with a garden to escape to. Alternatively, offer to meet friends with chronic conditions at their homes. It can get lonely being tied to the house. Just because my body isn’t working doesn’t mean my brain isn’t still in need of stimulation. Just not too much!
And please don’t go out when you have a virus or bug. You may feel like a brave little soldier, but for someone with a compromised immune system, a flu or stomach bug could be life threatening. Ask guests not to attend if they think they are coming down with something.
5. Choose gentle lighting
Fluorescent lighting is a migraine trigger, and it can also cause epileptic fits. The buzz can be overwhelming for some, and may obscure conversation for those who struggle with hearing speech clearly. Flashing lights and strobes can also cause problems. Natural light is my favourite, though fairy lights, candles and fires can be soothing too.
6. No radio/TV in the background
I can hear friends’ conversation or the radio, but not both, as I need all my attention on a single audio source. This can make cabs hard, particularly if people are chatting too. Overload! I’m not ignoring you – I’m just trying to process what you’ve said. If you’re in a cab ride with the radio on, ask the driver to turn it off.
7. Avoid queues
Standing is hard for many people with invisible illnesses. I’ll often faint if I stand for too long, and ‘too long’ can sometimes be minutes. When I ask for a chair, I’m not being a diva – I’m probably about to pass out. Try to plan activity or arrival time to avoid queues or book tickets that allow you to bypass them.
8. Provide an escape route
Chronically ill friends may only be able to attend an event for an hour or two – and they may run out of energy unexpectedly. So pick a venue they can get home from easily. A spoonie friend says, “The worst nightmare is being dependent on somebody else for a lift – I can end up waiting around for them for hours, feeling like I’m dying, which can severely affect my health for days or weeks afterwards. I can’t go anywhere if it isn’t easy for me to leave when I need to.”
Equally, some spoonies can only handle social events if there is a quiet room they can escape to where they can take rest breaks. Venues are often able to provide these if you ask for it as a medical necessity and if you’re having a party you should set aside a quiet space.
9. Try not to change plans last minute
Going out is a complex operation for a chronically ill person that will often require a lot of energy for precise planning. A friend of mine needs to eat at carefully timed intervals, for example, so needs to know when and where food will happen so they can plan around that. If you make last minute changes to location or time that could mean all that planning and energy is wasted.
10. But be flexible!
While spoonie friends may need you to avoid last minute changes, they also need you to be flexible when it comes to their needs. If I have a sudden flare-up of symptoms, changing venues to somewhere nearby or meeting at home instead means I still get to have a social life. I try to extend the same favour to chronically ill and disabled friends.
It may seem like a double standard but the difference here is choice: I can’t choose not to be in pain. Trust me, I feel intensely guilty at having to be self-centred around hangouts but it’s that or risk 48 hours-plus immobilised.
No one expects to you to get it right all the time – and equally you can’t be expected to read people’s minds when it comes to accessibility requirements, because as you can see from the above, all spoonies are different. We are used to our non-disabled friends not inviting us to things at all, so any effort on your part here is likely to win our lifelong gratitude! Don’t hesitate to ask us what our particular requirements are. It will be appreciated.
Spoonies, what would you add to the list? Let us know in the comments.