When you have a chronic illness like ME/CFS, Fibromyalgia or Lyme disease, missing out on the things that used to be a part of our life is an everyday occurrence. After a period of grief, we tend to come to a level of acceptance that helps us get by until something comes up that reminds us again. The holiday season is full of those reminders! The things that come around only once a year tend to hit us harder.
Missing out affects everyone with a chronic illness. Even though I see myself as relatively well now, that is built around a structure of routines and self-care, that when disrupted has very negative consequences. I’m no more able to get involved in seasonal activities than someone quite a bit sicker than me.
Being spontaneous, alcohol, seasonal food, seasonal outings, family walks, club/office parties/dinners, preparing food for the family, shopping in real shops with all the seasonal atmosphere, visiting friends or meeting up for coffee and a chat, making cards and presents are all out of reach – at least in the ways they used to be a part of life.
I’ve found that the best way of dealing with missing out is being prepared for it and having my strategies all mapped out in advance:
1. Face it early
There are a lot of emotions involved in missing out. Dealing with those emotions in the middle of the holiday season takes a lot of energy at a time when there are already a lot of extra demands on that energy. I aim to deal with the emotions and reach an acceptance earlier on, when there are less demands on my energy.
2. Grief leads to acceptance.
When I allow myself to grieve, show myself acceptance and compassion for how understandable it is to have those feelings, without fear of getting stuck with them, they flow and change and I reach an acceptance. The sadness may come up again, but because I’ve practised the kindness needed to let it flow, it comes easier and flows faster, using less energy the second time.
3. Make a strategy postcard
If you’re not so used to finding acceptance and compassionate understanding of your feelings, ask yourself what the kindest most loving person you can imagine would say to you when you are feeling that way. Then write it down on a postcard that you can keep with you and refer to any time the feelings crop up. I also find it useful to have a reminder of an alternative focus for my thoughts for after I have allowed the feelings to flow. My favourite distraction is to remind myself that really the holiday season is all about love, and I can still be involved in loving and being loved.
4. Make an alternative plan
How could you enjoy the essence of what you’re missing out on in different ways, or how could you give yourself an alternative treat? I can no longer be fully involved in cooking the Christmas dinner but I usually make the Christmas pudding months in advance so that I have contributed in some way. Although I can’t eat any of the normal seasonal fare, I make myself ‘damage limitation’ seasonal treats, things that I really shouldn’t eat much of, but I can get away with as a one off. Although I can’t make all the cards and gifts I’d like to make, I spend some of the time I would have spent socialising making various kinds of chocolate truffles for my nearest and dearest.
If you can’t attend a family gathering could you plan a special way of spending that time? A special movie with special food, and a Skype call to the event to connect in briefly? Could you make a date to talk to someone on the phone to ease any sense of isolation?
5. Quality Time
Because of having to slow my life down, I’ve learned some useful skills. I’ve learned to be appreciative of the little things and to really pay attention to the good things in life. During the holidays I may not be able to get involved with people as much as I used to be able to, but I’m much better at being present and appreciative of the contact I do have. I don’t feel like I’m missing out quite so much when I put the focus on quality instead of quantity.
6. Vicarious enjoyment
Part of the way I enjoy quality time with my loved ones is to enjoy the experience of them describing some of the things that they’ve been able to do that I haven’t. I know that by them telling me about it, they are getting a second burst of enjoyment out of it. Being a recipient of their story adds more enjoyment to the world and that makes me feel good! I’m happy for them and I get to taste the joy of the experience.
7. Embrace Peace
The holiday season can be pretty hectic. The advantage of not being able to get involved in the same way is that we don’t have to engage with all that hassle. I aim to give myself a peaceful holiday. I aim for relaxed effortlessness, quiet creativity, relaxing aromatherapy. Whenever I hear about the hecticness of holiday preparations I think myself lucky that I don’t have to get involved in all that and congratulate myself for being able to enjoy them peacefully!