As spoonies, we are often in a never ending battle with our health, so it seems beyond unfair when we find ourselves in other battles. So many of us have lost friends (even best friends) and/or family while we try to keep putting one foot in front of the other. I've spent a lot of time trying to understand why people, who you always thought would be there for you through thick and thin disappear. I'm lucky to have a strong support system both online and in my "real" life, but I haven't been immune to losing friends. I've tried to put myself in their shoes (as we ask others to do for us) and there isn't a single reason that I can find that makes leaving a friend who is fighting for their life OK. At least any that aren't horribly distasteful.
I know we are no longer "fun" and we more often then not turn down invitations over and over because we either know we just can't manage or we don't know if we'll be able to, so we just say no now instead of having to cancel, but we're still here. And feeling even more alone than many can imagine. Trust me when I tell you that we feel unbelievably guilty every single time we have to say no to plans.
With chronic illnesses, our fight is long and, sometimes, it feels like we are forgotten or given up on. Initially, friends and family rally around us, and then, one by one, they seem to drift away much like the control we used to have over our own lives, but every once in awhile, there are friends who run towards you instead of away when you're ill and those should be treasured like the absolute best present you could ever get, much like our online spoonie families... Because they are. All too often, however, they are far away. Never, though, second guess their love and support of and for you.
Perhaps, however, this is part of the reason why holidays are so difficult for us. The loss of those friends and even family sometimes hits home even harder... And the loneliness is suffocating. Christmas used to be my favorite time of the year, but lately, since my health has deteriorated again, it feels like dozens of obstacles I'll have to fight and push myself through. Holiday parties, decorating the house/tree/etc, explaining to people over and over how you're doing, finding something comfortable but appropriate to wear to any gatherings you actually have the energy to attend, and for some of us, the realization that those wonderful holiday meals are full of things we can't eat because of our illness yet we aren't well enough to cook anything ourselves. So we pretend we aren't hungry just like we pretend we're fine with our plastered smiles.
But worst of all is saying no. That we won't be able to handle the family Christmas or holiday parties. Instead, we will resign ourselves to sit, at home, alone, while being eaten alive by the guilt of not being there. That loneliness is joined by guilt because, after being ill for so long, we would never ask our significant other to stay home and miss out on yet another event. They aren't sick, we are, so why make them miss out on something else? But inside we are devastated that they're going because who wants to spend the holidays alone?
This year, however, I have realized that regardless of what we're missing, we have one huge thing to be thankful for... We're still here. We may be having daily struggles, but we are still fighting. With that hope that tomorrow will be better. So, if you are alone this holiday season, remember that we have the biggest present of all, life. Don't get me wrong, I know this doesn't erase how it feels to miss everything you WANT to do in the next week or two, but I've lost people in my life, one in particular who I have thought of daily for the past 15 years because she hasn't had the choice to be with family over the holidays. A random twist of fate stole her from so many way too soon. We often get caught up in our own daily battles, for good reason, but this year I will remember the bigger picture. Of what I do have and not what I don't. Regardless of how bad your life might be at times, it could always be worse. So, as we approach the holidays, try to remember the good and not just the bad. I dare you all to find just one thing that is good every day. It doesn't have to be huge, could be as "small" as a stranger smiling at you, but write something. I bet it will slowly change your inner script for the better... And isn't this season all about giving gifts? What is a bigger gift than seeing the world with fresh eyes in 2016?
In Memory of Allison "Ally" Stevens
March 31, 1984 to July 7, 2000
I know we are no longer "fun" and we more often then not turn down invitations over and over because we either know we just can't manage or we don't know if we'll be able to, so we just say no now instead of having to cancel, but we're still here. And feeling even more alone than many can imagine. Trust me when I tell you that we feel unbelievably guilty every single time we have to say no to plans.
With chronic illnesses, our fight is long and, sometimes, it feels like we are forgotten or given up on. Initially, friends and family rally around us, and then, one by one, they seem to drift away much like the control we used to have over our own lives, but every once in awhile, there are friends who run towards you instead of away when you're ill and those should be treasured like the absolute best present you could ever get, much like our online spoonie families... Because they are. All too often, however, they are far away. Never, though, second guess their love and support of and for you.
Perhaps, however, this is part of the reason why holidays are so difficult for us. The loss of those friends and even family sometimes hits home even harder... And the loneliness is suffocating. Christmas used to be my favorite time of the year, but lately, since my health has deteriorated again, it feels like dozens of obstacles I'll have to fight and push myself through. Holiday parties, decorating the house/tree/etc, explaining to people over and over how you're doing, finding something comfortable but appropriate to wear to any gatherings you actually have the energy to attend, and for some of us, the realization that those wonderful holiday meals are full of things we can't eat because of our illness yet we aren't well enough to cook anything ourselves. So we pretend we aren't hungry just like we pretend we're fine with our plastered smiles.
But worst of all is saying no. That we won't be able to handle the family Christmas or holiday parties. Instead, we will resign ourselves to sit, at home, alone, while being eaten alive by the guilt of not being there. That loneliness is joined by guilt because, after being ill for so long, we would never ask our significant other to stay home and miss out on yet another event. They aren't sick, we are, so why make them miss out on something else? But inside we are devastated that they're going because who wants to spend the holidays alone?
This year, however, I have realized that regardless of what we're missing, we have one huge thing to be thankful for... We're still here. We may be having daily struggles, but we are still fighting. With that hope that tomorrow will be better. So, if you are alone this holiday season, remember that we have the biggest present of all, life. Don't get me wrong, I know this doesn't erase how it feels to miss everything you WANT to do in the next week or two, but I've lost people in my life, one in particular who I have thought of daily for the past 15 years because she hasn't had the choice to be with family over the holidays. A random twist of fate stole her from so many way too soon. We often get caught up in our own daily battles, for good reason, but this year I will remember the bigger picture. Of what I do have and not what I don't. Regardless of how bad your life might be at times, it could always be worse. So, as we approach the holidays, try to remember the good and not just the bad. I dare you all to find just one thing that is good every day. It doesn't have to be huge, could be as "small" as a stranger smiling at you, but write something. I bet it will slowly change your inner script for the better... And isn't this season all about giving gifts? What is a bigger gift than seeing the world with fresh eyes in 2016?
In Memory of Allison "Ally" Stevens
March 31, 1984 to July 7, 2000
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