A good friend came over the other night, as she often does, for a glass of wine. We’ve been close friends for many years. She is the only friend I have who knew me before I got sick. Admittedly she didn’t know me ‘healthy’ for very long. I have been messed-up-chronic-pain-girl longer than I was bad-influence-get-her-drunk-at-the-pub-girl.
We have a few wines every week. Sometimes we laugh a lot, sometimes we talk about deeper things. She has seen me on good days and bad days. This day she had something on her mind. Something that was troubling her.
A friend of a friend. She didn’t have all the details, but she’d heard that this woman was ill. She was very ill. She IS very ill. She has some sort of disease, they (the doctors) aren’t sure what. It has attacked her kidneys. It has attacked her heart, she thinks? She suffers from chronic pain and is often house bound now. This woman was previously very fit and a gym junkie…now she can’t walk. The husband was an asshat and had left. My friend said it was some sort of virus or something. Something that made her body attack itself. Or something like that.
I’m thinking autoimmune, of course.
‘No, I don’t think so.’ says my friend. ‘It’s really serious.’
Nevermind. Carry on. She didn’t mean that.
I’m wanting to change the subject now, because I know that I’ve been in too much pain lately, and I’m feeling too emotional for this to end well. But my friend is on a roll. She continued.
‘It just came out of nowhere. One day she was fine, and the next she was in so much pain she couldn’t get out of bed. She saw doctor after doctor, but none of them knew what was wrong. She nearly died.’
She went on to talk about how frightening it was. How precious life is. How scary it is that these things can just happen from one day to the next. How you have to live life to the full. How no one knows what’s coming next.
I whole heartedly agreed. But still couldn’t quite believe she was saying this to me. So I said to her that it actually sounded pretty familiar. To give her a hint that maybe she was missing something here.
I was holding back tears. Luckily I’m such a hard-faced-ice-maiden-bitch-goddess that no one can ever tell when I’m holding back tears. Except for those rare occasions when I fail, of course. So I calmly asked if she was sure it wasn’t Lupus?
‘No’ she said. ‘It’s something much worse. She was on chemotherapy and everything.’
Chemotherapy. I didn’t even ask her what kind. If it was methotrexate. She wouldn’t have known the answer.
It sounded so familiar. The way the disease was being described sounded like a perfect layman’s description of something like severe RA, or lupus or any other severe form of autoimmune arthritis. Or any number of autoimmune diseases.
It could be something entirely different, of course. But it just highlighted how little understanding there is. How someone so close to me didn’t recognise me in the story she was just told a few hours earlier. And then turned around and told me that this other woman had something far worse than I did. And perhaps she does. I don’t know. But that’s not really the point. We are both far below where a normal human being functions…the details of who is worst off is academic.
And I was having a bit of a hard day…and it hurt. My friends ignorance. And her incredible concern for this friend of a friend. This virtual stranger. As I sat before her with a heat pack held to my jaw and a heated throw wrapped around my knees.
I know that’s partly my fault. I keep a smile painted on my face, for the most part. I tell people calmly and quietly when I am in a lot of pain. I don’t moan and writhe around. I very rarely cry. I don’t really make a fuss, unless it’s really bad. Even then, my idea of a fuss is pretty small time. But I can’t change who I am.
I guess that’s why this blog came into being. A safe place for me to let these emotions out.
There is something about me that doesn’t inspire empathy. Or compassion. Or caring. I don’t know why. Everyone knows that I am fine. That I will be fine.
And I always am.