Today we have a Guest Blog Post from our lovely volunteer, Katherine Stainer. Katherine is 18 years old, and has had M.E since the age of 13. Today, she shares with us her top tips on supporting a chronically ill friend over the festive season.
1. Keep in contact
Although a lot of our socialising is done over social media nowadays, it is still so easy to be forgotten and left behind when you are too ill to have face to face contact with the people you care about. It is because of this that many chronically ill people drift away from their friendship groups and can be left to feel extremely isolated and alone. I know first-hand that I would shy away from messaging my friends first for fear of feeling like a burden or that I was bothering them, but even something as simple as a supportive comment on a new profile picture would instantly brighten my day.
2. Trust us
Most chronically ill people walk/wheel through life never being believed or living in the shadows of “it can’t be that bad”, “well you did it yesterday” and “its only 1 more hour, can’t you just stay a bit longer?“. However, nobody knows our bodies better than we do. if we say we’re done or we can’t do something, trust us. Better things to say are “how can I help?”, “what do you need?”, “do you want me to come over?” and my personal favourite, “I hope tomorrow is kinder to you”. Being able to trust a chronically ill friend comes with mutual benefits, believe it or not.
3. Keep the invites coming
Now, this might seem counterintuitive. You might think if you invite someone who can’t come to something, that said person might become upset. Right? But I can attest that there is nothing worse than being sat at home on a good day and seeing photos of your friends on social media at a party you didn’t even know was happening. This can lead to the deep dark hole that is “they wouldn’t have wanted me there in the first place” or “what did I do to upset them”. There is honestly nothing I love more than being able to say yes to an invitation, even if I only attend for a short amount of time. The feeling of being left out altogether is MUCH worse that the feeling of missing out if I can’t manage it.
4. Educate yourself
This is so simple, but so overlooked and underdone. I can guarantee any friend with a chronic illness will massively appreciate even a basic knowledge of their particular condition(s) and of the spoonie community. Don’t be afraid to ask questions or show an interest as long as you’re not rude or invasive: I’m sure the questions will be met with eager answers. Just don’t ask on a brain foggy day that’s going to be counterproductive. It is here that I must point you in the direction of the “Spoon Theory”, this theory, coined by Christine Miserandino, is the most universally recognised explanation of how life is impacted by a chronic illness. Don’t forget though, everyone is different. If you’re not comfortable asking questions, there is bound to be an organisation which specialises in your friend’s illness (e.g Action for M.E or Ehlers-Danlos Support UK) who have a wealth of knowledge and information.
5. Keep it close
Something a lot of people don’t take into account when organising something is the amount of energy (or spoons, if you took the above advice) it takes to travel to an event. This includes finding somewhere to park, making your way from the parking spot, finding the right building, and that’s if you’re lucky enough to get a ride, you could be standing on a packed train urging yourself not to faint on the unsuspecting rush hour commuter to your left. Not to mention the pre-planning, finding the quickest route, calling the venue ahead of time to check accessibility… all of which can completely scupper your chances of attending. It’s usually a case of turning around and heading home instead. Most of this can be averted however, if at least some of the events are kept near to home. Want to go out for lunch? Don’t always book the new fancy place 45 minutes away. Check the local pubs and restaurants; you’ll be in with more of a chance for a successful and relaxed afternoon if you keep it close to your friend’s home.
6. Don’t dumb the fun
No one wants to feel like everyone around them would rather be doing anything else other than spending time with you. Just because we can’t do everything doesn’t mean we want everyone else not to enjoy themselves. We just ask that you appreciate that we might not be able to be there. Don’t stop your life because we have to stop ours. Although its bittersweet to see our peers racing through life we understand, now more than ever, the value of life’s little adventures. Please just remember we are the same person we have always been and are just as capable of having a good time when we are well enough to enjoy it. I myself have always been told that I was “born for a girl’s night out” and being ill hasn’t changed that, only the way I can go about it.
7. Show you care
When you are so isolated, it’s easy to start believing that the people around you begin to lose interest or stop caring. Again, when you don’t have that face to face contact as often as you’d like, your mind can start to doubt who your true friends are. Showing that you care doesn’t have to come in the form of a grand gesture or anything, even something as simple as a “hi, how are you?” text or posting their Christmas card to make sure they get it, on the off chance you won’t see them till the new year. There was nothing more devastating than the first Christmas after my diagnosis, I didn’t have a single Christmas card from my friends, when I was used to coming home from school with mountains of glittery red envelopes. And as Christmas can be an especially challenging time of year for chronically ill people, why not surprise a friend with a Spoonie Survival Kit? Make this season more comfortable and enjoyable for somebody you care about, and support chronic illness charities at the same time. Showing that you care, in any way, shape or form, can mean the world to somebody.
Can you relate to Katherine’s experiences? We’d love to hear your thoughts, and if you have any top tips of your own, do share them with us!