Facing Christmas With the ME/CFS Community at Phoenix Rising

by Jody Smithcandles in the dark at Christmas time

Christmas can prompt intense mixed feelings for those of us with ME/CFS. Those of us who were not stricken in our youth may have some wonderful memories of the holiday season. This can prompt anticipation and longing, accompanied by dread.

Anticipation may be triggered as an automatic desire for a repeat performance of those early experiences. Longing stirs if this is coupled with the realization that we are not in a place where those earlier times can be repeated. And dread strikes the failing heart if Christmas as we knew it will not be happening again this year, and possibly will never be the same again.

Our young sick ones may not have many early fuzzy memories associated with Christmas. Perhaps as far back as some of them can remember, the holidays were always a treacherous time of too much activity, squeezing them dry of their diminutive store of energy. Maybe it was always a difficult time where they disappointed friends and family – and themselves – by an inability to jump into the family celebrations. The end of Christmas has perhaps always been welcomed with a collapse into bed for months of dragging recuperation.

Those with families may walk the emotion-fraught tightrope as we try with all our limited might to provide an environment and experience for our children approaching a happy Christmas time. Do we spend our diminished energies by taking part in holiday season activities, knowing we could be face-down on our beds come Christmas morning … or sooner? Or do we conserve our strength by streamlining and cutting out all but the basics, hoping that our presence with our families will be enough for them, and for us?

Those with families we won’t be able to see are seeing ghosts of Christmas past, in an empty bedroom, with or without Christmas cards from people we may never see. If we have no families, Christmas is a hollow, eviscerating loneliness underscored by the sense that the rest of the world is in a warm embrace with friends and family. We know with our rational minds that this isn’t actually the way it is for plenty of healthy people. We may remember from our own experience that Christmas often was a headache that didn’t live up to its press.

We know that everyone is prone to the stress and pressures and unrealistic expectations fueled by this hyped up time of year. We know that many “normal” people get worn out, run out of money, and can’t manage to touch all the bases considered essential to the holiday season. Family members fight or avoid each other. People eat too much or drink too much and drama can rise up like a soap opera.

But we also know that we would be more than happy to trade places with these stressed-out people who will recuperate after Christmas is over. Unlike us.

A place like Phoenix Rising helps. Being able to talk to other people who know what we are going through eases some of the pain and isolation. Being able to vent our unhappiness, anger and fear about being trapped in this situation can be done with others who sympathize, whose feelings we don’t need to worry about as we would with the people who are letting us down or who we are letting down.

Threads about the holidays and what they do to us begin to proliferate, our posts alternate between complaining or weeping about the wounds Christmas causes or re-opens, and talking wistfully about what we used to love about it.

Questions arise — How do you handle the requests and pressures other people lay upon the chronically ill? How do those that are well enough to get out, and who have some money to buy gifts with, manage to accomplish these Herculean feats? How do you shop if you can’t drive? How do you handle stumbling through the stores, and counting out money? How do you work your recovery from the sensory overload?

And how do you deal with the fact that the people you know don’t seem to understand that you are ill — ill — ILL this time of year? How do you forgive? Or do you?

The virtual gathering of other people with ME/CFS that happens here on holidays like Christmas brings some relief to the feeling of being alone and cut off from any caring on the face of this earth. Here are people with whom we can share our griefs, our nostalgic recollections of happier times, and our hopes that some day, they will come again.

To everyone at Phoenix Rising, may this holiday season bring you some peace and joy, and may we help each other through it all as a family and a community.


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