Out to lunch with a very dear friend last month (who is also a Spoonie) she asked me if I ever get annoyed with people for complaining about non chronic conditions. She had fielded a call earlier that day from a friend who was sick with a cold and she had mixed feelings about it.
As a Spoonie we are in a bit of a pickle when it comes to non Spoonies talking about their illness woes. While it is never fun to be sick, for any amount of time, there is always that knowledge that your friend’s cold will clear up. The stomach bug will go away and the friend will get back to life as they knew it before the ick set in.
I’m sure you can imagine that we feel both compassion for our miserable friend and jealous of their nearly guaranteed recovery. (I have to say “nearly guaranteed recovery” because we all were anticipating a recovery at the beginning of our conditions.) It’s a tough line to walk and sometimes it all comes down to how much compassion that particular person has for you.
I have always maintained that suffering is suffering-regardless of how short lived or “minor” it might be. Pain is pain and it all affects us until it is resolved. Up until recently I have never compared myself to an ill friend and said anything like “welcome to my world” or “now you know how I feel.” Strictly on the basis that my permanent pain doesn’t diminish their temporary feeling like crap.
Last night I said the words I told myself I would never say:
On New Year’s Eve The Hubs DJ’d a 70’s themed Studio 54 party in the cities and he wore these ridiculous platform shoes that did a number on his big toes. Over the last few days they’ve gone from tender to bruised and swollen. Every night after work he ices them and they are extremely sore. Since the morning after the party I have been giggling a little because as a woman I know the pain of wearing killer heals all night. In the last few days though, as his toes get worse I find my attitude on the whole thing getting worse as well.
Last night between dinner and bed time there were at least five different times when The Hubs complained of his toe pain. Commenting on how it was throbbing and repeatedly examining them trying to figure out what he could do to make them stop hurting.
It wasn’t so much that I didn’t feel for his suffering, it was more so the fact that he has had pain for six days and can hardly take it while I have been living with this pain for the last five years.
Five years to his six days and I think I have complained just as many times as he has. My point isn’t that he is a baby, or a whiner or even that I think he should stop talking about it. His feet look awful and I don’t doubt for a moment that they hurt like a bitch. My feelings are deeper than that. I honestly don’t even know what I feel when he says something about it but I know it’s a deep cut.
Last night as we were getting into bed he said “I hate this. It’s slowing me down.” It was all I could do to not drop to my knees and cry. I wanted to look at him and say “You think this is tough? Six days you have had to take it easy. SIX DAYS! This has been my life for FIVE YEARS. Five years of being ‘slowed down’ every day. Five years of constant throbbing and aching and disrupted sleep. Weeks of recovery stuck in bed from surgery after surgery, days lost to fatigue episodes so strong I couldn’t lift my own arm.”
I didn’t say that.
What I did say was the thing I didn’t ever want to say “Welcome to my world, now you know how I feel.”
Immediately I was back in the booth at Panera with my Spoonie friend thinking that this feeling right here was exactly what she was feeling when we had that conversation, and I sat there telling her she didn’t deserve to feel that way.
Like I said before; it’s not that I don’t feel for him. I do. I see the ugly bruising and swelling I know it must hurt pretty badly for him to be making noise about it all. Just like I am sure my Spoonie friend understood 100% that her sick friend was feeling like crap. I think what she wanted, what I wanted, was a little bit of recognition for our considerably longer experience in the illness and pain world.
As someone suffering we can understand on a deeper level what it is like for a loved one to be sick. Because I hurt all day every day I have a deep compassion for The Hubs’ pain in his feet and I do whatever I can for him when he gets home from work to help ease the pain.
Sometimes, most of the time, as a chronic pain/illness patient we feel like our suffering gets swept under the rug in light of every other thing going onin life and the only person left to remember we are fighting this never ending battle is us.
The Hubs will fight his battle against this pain for another week or two, each day getting a little better as it heals up. My Spoonie Friend’s sick friend will fight her battle against her cold for a few more days before she is back to feeling 100%. I will fight this battle against my pain every single day for the rest of my life.
Those moments that The Hubs has when his toes hurt so bad he can hardly walk will fade and become a memory of the time his crazy shoes did a number on his feet. My pain will never be a memory. It is always there, always slowing me down, never fading way.
I realize that there isn’t a way for our loved ones to make us better. There is no magic wand to wave that will cure the pain and sick we are dealing with, and that doesn’t give us a free pass to look down on anyone who isn’t fighting this fight. Suffering is suffering and it all deserves compassion. But I still can’t help but feel like it would have been nice if The Hubs could consider his pain and use it as a tool to consider what my fight might feel like.
I think deep down, I just want someone to take my hand and tell me that they see how hard I am fighting and they are right there with me. I think we want someone to say “I don’t know how you do this every day.”