Our Newly Ill Face Their First Holiday Season with ME/CFS
by Jody Smith
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling it ... or not.
For the newly ill, though, life is suddenly full of ominous shadows and question marks. I'm betting all of us old ME/CFS veterans can remember the first time everything was ripped away, regardless of how many years ago it happened. There's no pain quite like that first onslaught.
I remember the Herculean challenge in my early stage of illness of trying to be a mother and wife at Christmas time. I used to bake and decorate and do the holiday shopping. I belonged to community groups and churches that would throw parties. Sometimes I was in charge of the group and helped throw the party.
I loved the work, the preparations, and let's face it, I loved the accolades that sometimes came with it all. I knew who I was and I liked who I was. That era was hectic and blissful. And then came the falling of the curtain on the whole thing.
It was many years ago but in some ways it feels like it just happened.
But for the newly initiated among us ... it did just happen. And they are understandably terrified as they struggle with the loss of their familiar lives and the new task of hanging on for dear life. They are faced with the loss of their place with their communities. Their roles and camaraderie are slipping from their frantic and shaky grasp.
Their children are suddenly faced with a mom or dad who is not pulling their weight, is not fulfilling the seasonal traditions that they've come to expect. Or more accurately maybe the kids are not being faced with their parent at all. Because not only is Mom or Dad not providing the usual holiday fare of any type, they may not even be able to show their faces outside of their bedroom.
Disappointing your family is torture. But at least in such scenarios, there is family, yes?
Not so for those who will be all alone. Not for the ones now having their first year of isolation, loneliness and dismissal. No one is there to talk to, to reassure, to help ease the misery and the dread. And unlike us oldsters who are all familiar with this state of affairs, these newcomers are not used to it at all and it is a tremendous blow.
Maybe you're like me, and you've lived with ME/CFS for decades. If so, you know that this holds its own unique tragedies. There's nothing to shout about when your life has been put on hold as your illness has dragged on.
But over all that time, you have hopefully been able to develop some strategies to manage the pressures and logistics. And if you are like me, you have managed to lay hold of some friends online who are likewise chronically ill and understand. If you're like me, some of those internet friendships have already lasted for almost a decade.
It ain't exactly normal but it is a status quo you've learned your way around and you're grateful for the company, even when it is mostly online. We have hung in there. We may have done so on our faces, but we've hung in there nonetheless.
But maybe you're not one of the long-time Phoenix Rising community. Maybe you have just recently been clubbed by ME/CFS.
You're visited with bleak and terrifying changes to your life and sense of identity, to your abilities to meet expectations of the people who matter in your life. And maybe as the snowball picks up speed and increases in size, you wonder in panic where the juggernaut will stop. Will it ever stop?
More people falling ill all the time. They're starting at Square One, not knowing where to turn. They are being dissed by medical professionals, friends, family and former co-workers. They're faced with possible loss of employment, loss of income, and whatever status they used to have.
And getting to be doused in all this just before Christmas? Priceless.
I remember too many Decembers when I had to just curl up and shake. The first ones were the worst, though, I have to say. My self image, self respect, and sense of who I was melted down.
My family was shocked, I have no doubt. But I was probably even more shocked than they were. How could I just ... let go of things? That's not the kind of person I was. But I had to become that person.
So many dismal milestones of disappointment and loss. Have you been through some of these? Maybe you've gone through other ones as well.
- But I always bake pies.
- But I always do my own Christmas shopping.
- But I always take my kids to holiday events and activities.
- But I've never spent Christmas Eve in bed, seasick and gripping my pillow for dear life. I've never said No to our holiday traditions. I'd never leave my kids hanging and disappointed because Mom (or Dad) is just ... not ... there.
Huge guilt. Overwhelming sense of shame. We stand (or spread flat) mortified, embarrassed, appalled.
Well, this got pretty depressing pretty fast, didn't it?
But this is the reality we all share to some degree. And it's a big part of why Phoenix Rising exists, and why this community has lasted and grown. It's why we all come here. Because whether we are old-timers here or newcomers, we need each other. We can lift each other up, share information and encouragement. We can hold the fear at bay for a bit.
We are creating a network the likes of which none of us have ever seen before. And as we continue to build this home and community, we can also offer some relief and protection under our seasoned wings for the newly fallen.
Remember when you discovered that you could turn to Phoenix Rising and connect with friends here who understand what you were going through and how lonely it all was? This experience has helped to prepare us to offer that same hope and help to our newbies.
Happy Holidays to the old and the new. We are all in this together. I'm so glad we can gather here.