How To Invite Your Spoonie Over For Dinner
Chronic Fatigue is tricky to deal with, especially if you’re the friend of someone with it. Nobody wants to be the person that drags the unwilling sickie out the door to exhaust them even more with a dinner party where they will be a complete wet blanket. Except that most people with Chronic illnesses are extremely isolated and desperately need and want to be more social. Earlier in November I was invited over to have dinner with Matt and Amanda. Amanda has battled with Chronic Fatigue herself and her experience and understanding helped to make the night a great success for everyone.
These suggestions might make it easier for you to enjoy an evening with your chronically ill friend.
- Do the asking. Your spoonie* is alone and confused and may have issues with arranging a get-together. These could range from fear/anxiety related to exertion, to a reluctance to ask people for help or make a fuss, to a general feeling of unworthiness related to being sick/unemployed/undiagnosed. Gently suggest the idea to your friend and don’t be upset if the answer is no. One no does not mean never so keep coming back, just never with insistence, expectations or pressure. Knowing that someone wants them can mean the world to your spoonie so never be afraid to ask.
- Be flexible. Travel might be difficult for your spoonie so be prepared to help them make arrangements or fit in with the schedule of their partner/driver. Be emotionally prepared for a raincheck as chronic illnesses are sometimes hard to manage and symptoms can suddenly flare up. Know that if your spoonie cancels he/she will be devastated and feel incredibly guilty/angry/hopeless. Be understanding and accommodating.
- Keep it small. We all love lively dinner parties with 6-10 guests, three courses, flowing wine and interesting conversation, but this scenario is terrifying to your spoonie. Keeping track of the conversation can become difficult in large groups and it’s easy to become overwhelmed. Limiting the dinner to 2-4 guests keeps it quiet and manageable and will hopefully avoid sensory overload.
- Cater to their dietary needs. These are probably very extreme and very strict. Your spoonie likely feels guilty that his/her needs are so difficult and burdensome to others, so make it clear that this is something that you don’t mind doing. Ask for a written list of foods they can’t eat (or the ones they can if it’s shorter), and then send them an e-mail of the food you are going to cook for them to check the ingredients. This meal does not need to be fancy; meat and three veg, an omelette or a big raw salad will do fine. The important thing is seeing your friend, not being the host with the most. If you are struggling with food ideas, ask them for a simple recipe that they use all the time. Always check the label on packaged foods for hidden sugars and preservatives.
- Check for any extra needs. Depending on what illnesses your spoonie has they might have other needs – ask them directly if there is anything else you can do or provide for their comfort. They may need to lie down for half an hour upon arrival, they might need to have an injection before or after the meal, they might be sensitive to light, they might get confused with background music, they might need to bring medical equipment along. Just be relaxed about anything unusual.
- Keep it short and sweet. Serve dinner promptly, have a cup of tea on the couch and then send your spoonie home. The shorter the evening is, the less exhausting it will be and your spoonie will feel more confident trying something similar in the future. Even if he/she seems fine they are probably running on the exhilaration of being out and seeing a friend and will pay the price in post-exertional malaise tomorrow.
*Spoonie is a slang term for a person with a chronic illness. It was coined by Christine Miserandino when describing how her illness affects her life – using spoons as a metaphor. It is recommended reading for anyone with a chronically ill friend. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Over to you; If you have experiences or suggestions as a spoonie or a friend I’d love to hear your comments!