It’s been months since I have had access to a reliable computer and blogging just does not work the same from my phone. I am so excited to have a working computer again! I love being part of the chronic illness community and it’s so hard to blog surf from your phone. I miss reading other people’s stories and hearing about their struggles.
It’s amazing how alone you feel when you don’t have access to other people with health problems. Don’t get me wrong, I have great friends and family in real life that I rely on for many things, but sometimes I just need to talk to someone who gets it. I need to talk to someone whose life has been turned upside down as my has. I need to talk about my health without worrying about being perceived as a complainer. I need to talk about my struggles without worrying about being judged for the way I’ve handled things. I need so talk to someone who can say, “I’ve been there, and I understand.”
I rarely talk about my health with people in person beyond a very basic summery of what is going on. I don’t get into the day to day struggles that wear me down and make my life different then theirs. Sometimes I feel like I’m an actor in a play because so few people know what is really going on with me and my body at any given time. All they know is that sometimes I’m the life of the party and sometimes I just disappear for a while. On the surface I live a very normal life. I have kids, I’m involved in the the community, I’m married, I have a social life, all completely normal things. Sure I’m missing a job, but that could be explained away by my kids. Sure I don’t make it to every school event, but that’s easily explained away by laziness (and in truth, sometimes I do miss things because of laziness!). Even my wonderful spouse has very little idea of what it is like to be me. For example, he knows I’m in pain all the time, but doesn’t know that every tiny movement I make causes pain. Typing causes pain, getting out of a chair causes pain, moving my arm to stroke my child’s head causes pain, all things that no one else would think twice about. My husband sees the day to day effects of my pain but even he doesn’t understand how such little movements can cause such agony, because he’s never experienced it himself (and I don’t want him to). Sometimes I just need to interact with people who have been there.
Thank goodness for the internet. I can’t imagine how isolating chronic illness was before the advent of online communities. I’m so glad that at the touch of my fingers I have access to unlimited information and shared experiences.