I used to be an open book. I was the one you'd see striking up a conversation with the guy next to me in line at the grocery store. Or, maybe I'd be comparing ailments with the women sitting next to me in the doctor's office waiting room. But, since I got sick, I've become increasingly more private. Maybe some of it is just aging. I don't know. Maybe I would have been like this regardless if I would have developed a chronic illness. Don't get me wrong, I'm still friendly. I'll still smile and say hello. And, if someone strikes up a conversation with me, I'll talk to them. I just don't routinely start conversations and, if I do, I'll be brief. I think some of it has to do with the amount of energy it takes to carry on a conversation. And, too, there's the pain aspect. When you are dealing with chronic pain there's a tendency to turn inwards. Dealing with sounds, sights, and smells can be overwhelming.
With friends and family I tend to edit what I share with them. I probably share the most with my immediate family (husband & children.) I don't share everything with them though, mainly because I don't want to worry them. I also don't want to make my illness be the main focus of or family. In hindsight, I've probably gone too far with this. I really don't think they understand how sick I really am. I tend to push myself to do way too much. Sometimes, they see the end result of this; but even then, I don't think they "get" how much I'm affected by my illness. There's a kind of dance that's going on in our family. I do too much, then I collapse from pain and exhaustion and my family either doesn't really see it, or they refuse to believe what they see. Then, I become increasingly frustrated. In reality, this is my own fault. When I continue to do much of what I've always done, it's easy for them to not see the new me. Not to see my limitations. This is something I'm trying to change. It's hard though because the bottom line means I have to admit not only to them, but to myself what I'm able and not able to do. It's made even more complicated by the fact that what I am able to do changes daily, even hourly. No wonder they don't get it.
With extended family and friends, I share very little. I have a few close friends who I share more with, but I still hold back. I guess I don't want people to feel sorry for me. I envy those who have a group of close friends who stand by them, nurture them and just help them through those rough times. Friends who bring meals when needed. Friends who come to just sit and talk. Friends who understand when they can't do things with them. This isn't a slam against the friends I do have. Not at all. Ironically, a few of my closest friends have illnesses they are dealing with themselves. So, at times, they aren't able to help. I totally get them, of course. Perhaps, if I was more open about things I might get more of what I need from my friends. I've had friends offer to help and I've turned them away. Obviously, I need to work through this too. My extended family, in-laws, cousins, etc. are pretty much in the dark as far as my illness. They may or may not even know I'm sick. If they do, I'm pretty sure most of them are unaware of how sick I am.
It probably seems sort of odd that I share the most with people I've never met. But, the people that know the most about my illness are those who are dealing with EDS or another chronic illnesses themselves. Most of them truly understand. These are people I've met through Internet message boards or Facebook groups. Some of them I met at the EDS National Foundation Conference. We've learned a lot from each other. We've shared the latest research papers, doctors' names and helpful medications. We've encouraged each other on those bad days and rejoiced on the good days. I'm truly thankful for this group of people.
I suppose I need to at least mention social media. On Facebook, I usually do not share information about my illness in my status updates. I may mention an upcoming doctors appointment or share general EDS information during May, which is EDS awareness month, but that's about the extent of my sharing. I do interact in EDS Facebook groups, but those are usually the private groups in which only members can view the content. A time or two I did post when I was having a particularly bad day. As soon as I did it though, I regretted the decision. I suppose I don't want to come across as a complainer. As someone who is seeking attention. But, when you are at your lowest I think it is human nature to reach out to people. So, I suppose it's not the worst Facebook faux pas I've made. I've started using Twitter. Scary. I still don't understand all of the #'s, &'s,etc. I use it mostly share info with other EDSers. So, if you're thinking about folowing me, you've been warned.
I hope I've at least given you some insight into the mind of a chronically ill person's thinking in regards to this subject. Of course, all of this is just how I handle sharing information. I don't think there's any right or wrong when it comes to talking about your illness. I will say that a little bit of information can go a long way.
This would be a good time to tell you to feel free to share my blog with anyone that you feel it may help. I figure if someone takes the time to go to my blog, then they know what they are getting into. My blog is written, as I've said, not only to help me, but to help others in the chronic illness community. This is where I "let it all hang out." I still don't share everything, but I probably share more here than anywhere (even with my family & friends.)
I need to go rest up for tomorrows blog now. I've been writing for over an hour. I'm telling you now that this is one of those things that zaps your energy. But, I truly enjoy blogging, so it's worth the extra medication that it takes.