By Jody Smith
In North America, the end of November traditionally kicks off the holiday season which runs till the beginning of January. “Holiday season” may seem to be at best an ironic term, at worst a bad joke, for describing this most taxing of time periods, especially for people who are chronically ill, and often poor and isolated as so many are who have ME/CFS.
In the United States, Thanksgiving pulls the trigger for the holiday season. It’s an occasion that does its best to bring some light and comfort to a cold, bleak time of year. At least, in theory. The reality is often something different, for healthy people and particularly for those of us who are not.
Looking ahead to the long nights of the colder months can be daunting for even the healthy people with real lives. The sense of gloom and isolation can be crushing for those who are sick and without a sense of community.
This can be a really hard time of year for people with ME/CFS. For many it is the worst time of year. Their symptoms may be tougher in the winter and they may be more cut off from the rest of the world because of the harsher weather, as they find it more difficult to deal with the elements outside their front doors.
Being at home all the time when you have no friends or family dropping by — a situation that besets so many chronically ill — can make even the shorter days seem too long and can make the longer nights hard to bear, especially when sleep is impaired. This time of year can make people want to hibernate, to rest… but this scenario is not the least bit restful for those who are lonely, sick and trapped at home, invisible.
And for the chronically ill, the thought of gatherings of family and friends can just add to the pain. The friends and family? For many of us — not there. Who among us has not sat alone, picturing other families gathering for a feast while we sit in an empty house? If you have family who will be gathering at someone else’s home, and you are too sick to go, the silence of your empty evening fills the room and your heart in an even greater way than usual.
Can’t have people over and be able to spend time with them. Can’t accept the fact they’re doing it someplace else without you. There is no winning. No workable solution. And all because your body and brain are too fragile to handle what you long for more than anything else — a sense of normalcy, a feeling of belonging, of security among the people you love. And so often the people who matter to you just don’t understand what you’re going through.
The holiday season can be tough for those who are all alone but it isn’t necessarily a bowl of cherries for those with ME/CFS who have family ties either.
Turkey dinner? Can’t cook it. Couldn’t eat it if someone else cooked it.
So many of us have food issues that if ignored can send us into orbit. For this one, it’s gluten. For the one with FODMAP sensitivities, there’s a bewildering array of foods on the forbidden list. Some are low carb by necessity. Some can’t eat meat. Many of us are dealing with so many neurological abnormalities, or struggle with vertigo, POTS or OI, that eating anything is out of the question as we white-knuckle our way through the ordeal.
In a gathering of family and friends, so often someone with ME/CFS finds themselves needing to hide away in another room because the noise of conversation, music and laughter is too much sensory stimulation. Their ability to carry on a conversation, even to be able to understand words spoken, to be able to put words together in response, is beyond them.
I have had to bow out at such gatherings in my home. Most years, I was fortunate to be able to share the meal, maybe even was able to help cook it. But an hour or so was my limit, and I would have to say my goodnights after a short time, and retreat to my bedroom with a book, or to lie face down, gasping, on my bed. My door had to be closed to reduce the amount of happy noise that would reach me down at my secluded end of the hall.
We’ve all felt the desperation that crushes us when we’re faced with the quandary of how to buy gifts. It’s not that we don’t want to do it. But when you’re too frail to venture into a store on a quiet day, the throngs of shoppers are like a tidal wave.
And then there’s the financial minefield so many of us creep through every day of our lives. During the holiday season, when there are so many things we want to do for those we love, knowing that we can’t because we can’t afford it or can’t get the job done is a constant grief. Feelings of shame, guilt, fear, resentment and anger become a toxic swirl that suffocates and terrifies.
For those who used to love to throw themselves into the hectic flurry of the holiday carousel, this can be a time of unremitting heartbreak. And for those who were stricken by ME/CFS at a young age, that happy experience is one they can only watch as though they are outside in the cold and dark, looking through a window at a scene of warmth and togetherness.
Their families may be so used to them not participating, not having much to say, not giving gifts that bring “Ooh’s” and “Ah’s” from the recipients, that the sick one is left to sit alone in the crowd… or worse, forgotten down the hall in their room, darkened and with door closed.
Did you used to bake cookies for the family? And now you must disappoint them — again. Are there old family traditions that now go begging? Were you always available to help with special events and parties? Now you must play Grinch as you say, “No, No … and No”.
Have you tried to explain to people who don’t grasp the severity of your illness? Do you feel like your words sound like a stream of excuses?
This is what the holiday season hurls at many of those with ME/CFS.
When I joined Phoenix Rising, the sense of welcome and understanding hit like the illumination and warmth that flows out of the open door of a well-lit house into a winter’s night. I discovered that I could talk about anything I felt, anything I thought, and not only would it be accepted, it would probably be met with a sharing, as well as a tending, of wounds from others here on the site who’ve been through similar wars.
Holidays were always busy days on these forums. Those of us who had nowhere to go and nothing that we could do, were gathered around the campfire of our computers, shutting out the gloom by our combined presence.
I could sit down to my laptop depressed or on the verge of tears, and a short time later be laughing with other members as we’d share holiday mishaps and misadventures from the past and not-so-long past. Or I could come feeling blue and stay to feel loved and understood — always a treasure, especially for the person with ME/CFS.
Does Phoenix Rising help you through the dark?
How do you deal with the holidays?