In the meantime, I have had a lot of thoughts going through my head recently. There's one thing in particular I've been ruminating on, so I thought I would share it here and see if anyone has any advice or insight:
When I was first diagnosed with AS, I was sending email updates to my closest family and friends, just to let them know what was going on. Everything was so new and scary for me, and I desperately needed support and understanding. As time went on though, I started to feel weird about sending these long, rambling emails to a growing list of people - As if I was begging for attention by pouring all of this into people's inboxes. So, I moved over to the blog, thinking that people could either read this or not, depending on how interested they were, and I wouldn't be forcing my way into anyone's day.
Now that more time has passed, I'm feeling unsure about the blog as well. After more than two years on this journey, there's no end in sight, and I have come to accept that it's quite possible, even likely, that this will be a lifelong thing. Symptoms will probably be better sometimes and worse sometimes. There will be scary moments and times when it's really hard, and maybe, hopefully, times when it gets easier, but life will keep rolling on, regardless. Given this reality, I wonder - does it make sense to keep on talking about this, to keep writing and reflecting and sharing in this public way?
Here are a few things I'm contemplating:
- I know that I have a temptation towards attention-seeking, and this illness certainly brings that out. I have heard a lot of people who are sick or struggling say that they don't want anyone to feel sorry for them, but, to be perfectly honest, I guess sometimes I kind-of do want people to feel sorry for me. As silly as it sounds, I suppose it does make me feel better when people notice how hard things are and feel bad that I have to deal with all of this. Living with chronic illness and chronic pain is certainly the loneliest experience of my life so far, and sometimes I find myself feeling really desperate to be seen and understood. But I don't want to be a person who is always seeking attention for herself, trying to get people to notice and listen and offer sympathy. Instead, I want to be a person who is generously turned outward - ready to notice and listen and offer help to others. I wonder if having this blog is a healthy venue for openness and self-reflection, or just an opportunity to seek attention?
- I am also tempted to make my whole life about this illness - to think about it, worry about it, cry about it, complain about it. Obviously, this is part of my life, and it's not going away anytime soon. But would I do better to give it less attention? Would it be better for my own happiness to stop giving myself an opportunity to talk about it? If I didn't think about what I might write, would that take away one more opportunity to obsess?
On the other hand, there are some good reasons to keep writing and sharing:
- First, I know there are some people who really do care and want to hear what's going on with me, and this blog is a good venue for sharing myself with them. I have always been a better communicator in writing than in person, and I'm more likely to have the courage for full honesty when I'm staring at a computer screen than when I'm looking at someone's face. So, in that way, maybe the blog helps my friends and family know and love me better - And that's a good thing, right?
- Second, I do believe that the world would be better if people were open and honest with their struggles, rather than just pretending everything is fine. I know that I really appreciate hearing the experiences of others with chronic illness - It helps me to not feel so alone. If what I write could do that for someone else who is struggling, then posting here seems like a good thing. Also, if something I write helps one of you better understand what it's like to live with chronic illness, maybe that is something you'll be able to use to understand and support someone else in your life who is struggling in some way. If so, that also seems worthwhile.
- Third, I know that God is at work in this whole thing. I don't always see it, but I believe with my whole heart that He intends to bring good from this, both for me and for the people around me. Maybe part of that work depends on me sharing my journey in this way. If so, I want to leave Him that opportunity.
So, all that said - Here's an example of how this works in my mind:
I recently read a New Yorker article written by a young woman about her experiences dealing with an auto-immune disease. It was very interesting and insightful, and it captured really well a few questions I have personally wrestled with. I came across the article on Facebook, and I thought about clicking the share button. But then I started wondering - Do I really think people would be interested in this article, or would I just be posting this to get attention, to draw people's sympathy? Should I post a comment about what I though about it, or what parts particularly resonated with me, or would that just be begging for a response when I really don't need one? After going back and forth for a while, I ended up not doing anything with the article, except emailing it to Mike (who is contractually obligated to care about all my thoughts and feelings).
Also, my shoulders have been starting to hurt over the past few months. It's pretty annoying and makes it especially difficult to sleep (since I have always slept on my side). I'm still trying to figure out how to work my life around shoulder problems, and frankly, it's just making me mad. I kind-of want to tell people that my shoulders hurt. Except I suppose there's really no good reason to do so. Do I just want people to feel bad that my shoulders hurt? Clearly, Mike needs to know so that he can do stuff for me that I can't do anymore, but really - does anyone else? Is it really helpful to whine and complain about each new joint pain? (Of course, I'm telling you all now, so there goes that.)
As you can see, I clearly need to figure this out. So, I'm posting this reflection here (and yes, I realize the irony of that as well) to ask - Honestly, what do you think? Should I keep blogging? Should I share stuff on Facebook? Should I talk about it with people when they ask how I am? Or would I be better off just giving less thought and attention to this part of my life? Would it lead to a healthier and happier life if I just... stopped?
I would truly appreciate your perspective as I try to decide what do do from here on out. Post a comment or send me an email, and let me know what you think!
Here are a few things I'm contemplating:
- I know that I have a temptation towards attention-seeking, and this illness certainly brings that out. I have heard a lot of people who are sick or struggling say that they don't want anyone to feel sorry for them, but, to be perfectly honest, I guess sometimes I kind-of do want people to feel sorry for me. As silly as it sounds, I suppose it does make me feel better when people notice how hard things are and feel bad that I have to deal with all of this. Living with chronic illness and chronic pain is certainly the loneliest experience of my life so far, and sometimes I find myself feeling really desperate to be seen and understood. But I don't want to be a person who is always seeking attention for herself, trying to get people to notice and listen and offer sympathy. Instead, I want to be a person who is generously turned outward - ready to notice and listen and offer help to others. I wonder if having this blog is a healthy venue for openness and self-reflection, or just an opportunity to seek attention?
- I am also tempted to make my whole life about this illness - to think about it, worry about it, cry about it, complain about it. Obviously, this is part of my life, and it's not going away anytime soon. But would I do better to give it less attention? Would it be better for my own happiness to stop giving myself an opportunity to talk about it? If I didn't think about what I might write, would that take away one more opportunity to obsess?
On the other hand, there are some good reasons to keep writing and sharing:
- First, I know there are some people who really do care and want to hear what's going on with me, and this blog is a good venue for sharing myself with them. I have always been a better communicator in writing than in person, and I'm more likely to have the courage for full honesty when I'm staring at a computer screen than when I'm looking at someone's face. So, in that way, maybe the blog helps my friends and family know and love me better - And that's a good thing, right?
- Second, I do believe that the world would be better if people were open and honest with their struggles, rather than just pretending everything is fine. I know that I really appreciate hearing the experiences of others with chronic illness - It helps me to not feel so alone. If what I write could do that for someone else who is struggling, then posting here seems like a good thing. Also, if something I write helps one of you better understand what it's like to live with chronic illness, maybe that is something you'll be able to use to understand and support someone else in your life who is struggling in some way. If so, that also seems worthwhile.
- Third, I know that God is at work in this whole thing. I don't always see it, but I believe with my whole heart that He intends to bring good from this, both for me and for the people around me. Maybe part of that work depends on me sharing my journey in this way. If so, I want to leave Him that opportunity.
So, all that said - Here's an example of how this works in my mind:
I recently read a New Yorker article written by a young woman about her experiences dealing with an auto-immune disease. It was very interesting and insightful, and it captured really well a few questions I have personally wrestled with. I came across the article on Facebook, and I thought about clicking the share button. But then I started wondering - Do I really think people would be interested in this article, or would I just be posting this to get attention, to draw people's sympathy? Should I post a comment about what I though about it, or what parts particularly resonated with me, or would that just be begging for a response when I really don't need one? After going back and forth for a while, I ended up not doing anything with the article, except emailing it to Mike (who is contractually obligated to care about all my thoughts and feelings).
Also, my shoulders have been starting to hurt over the past few months. It's pretty annoying and makes it especially difficult to sleep (since I have always slept on my side). I'm still trying to figure out how to work my life around shoulder problems, and frankly, it's just making me mad. I kind-of want to tell people that my shoulders hurt. Except I suppose there's really no good reason to do so. Do I just want people to feel bad that my shoulders hurt? Clearly, Mike needs to know so that he can do stuff for me that I can't do anymore, but really - does anyone else? Is it really helpful to whine and complain about each new joint pain? (Of course, I'm telling you all now, so there goes that.)
As you can see, I clearly need to figure this out. So, I'm posting this reflection here (and yes, I realize the irony of that as well) to ask - Honestly, what do you think? Should I keep blogging? Should I share stuff on Facebook? Should I talk about it with people when they ask how I am? Or would I be better off just giving less thought and attention to this part of my life? Would it lead to a healthier and happier life if I just... stopped?
I would truly appreciate your perspective as I try to decide what do do from here on out. Post a comment or send me an email, and let me know what you think!
No comments:
Post a Comment