I often share tips to help chronically ill people—or spoonies—manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time, as we approach the holiday season during a global pandemic, I thought I’d offer some advice to those who know and love a spoonie.
Please don’t give us a hard time when we cancel.
This applies all the time, but especially during the festive season when there are so many events. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. We really want to be there. All of this is tenfold during a pandemic, and spoonies need to be extra careful. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us, or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you, despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine, and we are incredibly grateful that you stick with us.
Take our restrictions or limitations into account when planning activities.
Disabled and chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate and relevant. If you consider accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds, etc.), it is much more likely that your spoonie friends can attend an activity. COVID-19 restrictions are essential for us, and we won’t be able to attend any event that doesn’t comply. More than that, we won’t actually be able to stay for the whole shebang and enjoy ourselves.
These days, it is much easier than you think: many venues are happy to help you make accommodations or already have them in place. All varieties of specialized food are commonly available. I for one am often happy just to know there will be a seat so I can retreat if I need to.
Take no for an answer.
If we say we are too ill, we mean it. We cannot come if we don’t feel the arrangements are COVID-safe. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.
Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life and soul at dinner last week, had a ball with the wee ones on Tuesday, and become unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.
Top photo by Amin Hasani / Unsplash
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