Following on from last weeks post about What we need at Christmas, we recognise that it’s extremely difficult for people to understand what it feels like to have a hypermobility condition, especially during the festive season. That makes it even harder for people to know what we need in the way of help and understanding, so we’re going to try and help with that as best we can. So, all I want for Christmas is for you to read this post.
Dear Important Person,
Living life with a chronic condition, one of the essential things needed all year round, but especially during the festive season is understanding & empathy from our loved ones.
Please know that December 25th (insert other holidays!) is NOT necessarily going to be easy for me. The whole festive season will be exhausting, as it is too for many collagen-typical people, but just double, triple or quadruple that and you might be close to understanding just how exhausting I mean.
It may also be more challenging for me, because of people’s expectations (and my own) of how people should feel and behave at Christmas. If my mood is low, or my pain level is high, I’m going to find it hard to keep that fake-happy-face on for too long.
If I’ve had bad Christmas experiences before (trauma), then it could be triggering for me. Depending on my situation, I may require you to stay with me so I don’t get my ear talked off by Aunt-loves-a-chat or inappropriate looks or comments from Uncle-inappropriate. I may need some help from you to buffer me from a past abuser or perpetrator of violence if that’s part of my history.
The best way for us to approach Christmas is to include me in the plan-making for the day. There are a plethora of reasons for that. The biggest is managing expectations of what people think I should and shouldn’t be able to do – just because it’s Christmas. I hate to break it to you, but my condition doesn’t go away, just because it’s Christmas.
If I’m a wheelchair user, I’m still going to be using a wheelchair
If I’m dependent on being fed via a tube, I’m still not going to be able to eat Christmas Dinner
If I have an eating disorder, I’m still not going to be able to gladly eat food in front of you, if at all
If I have chronic pain, I’m still going to be taking medication to get through the day
If I experience fatigue, I’m still going to have fatigue to manage
If I have a mental illness, I’m still going to have a mental illness – and no, I can’t just shrug it off for the day and “just be happy” or “just enjoy it.”
That would be like you un-breaking your broken leg, just for the day.
I’m in the process of learning to manage my condition in the best way possible – that includes Christmas Day and any other day of the year. For me, pacing and pain management have to be priorities, which means we need to factor them into Christmas plans. I probably can’t do everything that we get invited to; I will have to pick and choose wisely. Please don’t get upset or make me feel guilty if I say I can’t or don’t want to do something.
I also may not be able to go to the shops for hours to choose presents for people. We may have to shop online, and yes, pay for postage. I might not be able to go out late in the cold (or the heat). I may have to cancel at the last minute if something untoward happens. Please remember that my condition is unpredictable, not me.
Even though it’s Christmas, I might need more help than usual with things like showering, dressing and with household chores like clothes & dishwashing. In cold climates, my body might take a little longer to get going and need some extra help, and in warm ones, I might need to take more time to rest because I get lightheaded and faint. Unfortunately, my body doesn’t give me a break, which means my partner or carer won’t either (sorry, if that’s you reading this!).
There may not be any Midnight Mass, Christmas Eve Carolling or anything that requires staying up late. There may not be early morning gift exchanges or Christmas morning traditions. My Christmas Eve and my Christmas Morning may need to be just like any night and any morning. Remember we have to get through a WHOLE day; I need all my sleep and the calm of my usual routine to help me do that.
While I might love preparing Christmas Dinner, or helping to do so, I might need help getting it in and out of the oven, serving it up, and carrying it to the table. Please remember, just because I can’t do some things, like carrying platters of food, doesn’t mean I can’t do anything. I can do some things for myself – and I need to do them to feel useful. I can’t carry a serving platter. However, I can & will take that glass of wine, thank you!
Because of the frantic pace of the holiday season, especially in the lead up to Christmas Day, my fatigue is likely to be worse than usual. Even though my goal is to pace myself and manage my condition as best I can, some days are unpredictable, especially around this time of year. That means come Christmas Day, I’m potentially going to be exhausted, and then I’m going to try and pace myself through the day, so that I make it home/to bed that night in one piece and don’t end up in hospital. Yes, that’s the level of seriousness we’re talking about here.
If I could plan everything to make it perfect for my needs, I would have the right chairs for me to sit on – supportive & comfortable (don’t be offended if I bring my own to your place). I would have food that was good for my digestive system (easing up of the “junk foods”). I would have some downtime during the day for a rest. I would have had an early night the night before. There would be a good mix of time with others and opportunities for some time by myself to re-charge.
On an emotional level, I need people close to me to check in with how I’m doing this Christmas season, especially on Christmas Day and any other large gatherings or celebrations. Those who know me well know that I hide my pain, fatigue and emotions pretty well, so someone checking in with me a couple of times throughout the day would be nice – preferably not in front of the entire family 😉
When I say I’m not coping, I need some time-out, or I need to leave, I need you to hear that and respect it, and help me to make it happen. I realise Christmas is not all about me and my needs, but you know that I don’t pull the “I need this now” card very often. So if I do, it’s because I truly need it.
The most important thing I want you to know: While my condition doesn’t go away on Christmas Day, and that’s hard for me to cope with, I also realise that it’s hard on you (my family), too. It’s not easy seeing me in pain, fatigued, or struggling. The other thing that doesn’t go away is my gratitude, for you – for all that you do for me, and all that you are to me. Your love, support and assistance don’t go unnoticed.
So let’s try and have the best Christmas we can – with my condition, despite my condition, managing my condition – however you want to see it.
The best thing is that we get to spend it together.