Growing Deeper Roots: My Story of Invisible Illness

Writing about my journey with chronic illness has been both therapeutic and difficult for me. Many times, processing my pain and recovery is more easily done when I start writing about it. Other times, the stage of recovery in which I have found myself is so full of complex emotions and thoughts, that stitching them into words coherent to another person, even one on a similar journey, is just impossible.  So I have been upfront when writing this blog, letting you know that my posts might come more sparingly as the journey's direction changes. When I started going to therapy and working on the grieving component of my illness, I was honest with you, letting you know that I wasn't always going to write about the process, I would have to keep parts of it private. That's the stage I was in most of this spring, sorting my own thoughts out and wondering if I'd ever be able to put them into words. Or if I would ever really want to, if I would want to open that story up to...

"Everything happens for a reason." -Someone who has never mourned.  This dangerously misled and shallow misinterpretation of life is nothing less than emotional, spiritual, and psychological violence. It is nothing less than utter bullshit.  Whether you are mourning the loss of a loved one or a failed relationship or your lost health, this is the last thing you want to hear but it will be said to you. Someone out there with their incredibly naive perception of reality and Pollyanna outlook on your tragedy will utter this bullshit in response to your pain.  "Everything happens for a reason," "God has a plan," "This pain will make you a better person," and all your other painful paradoxical platitudes will not make it easier for me to watch my life shift in response to my lost health. All you are doing with these phrases is replacing my grief with unsolicited advice.  Now, I'm not saying that I do not recognize that I have grown immens...

I've heard this is true for many chronic illnesses and I've seen it to be true for myself: there are good days, there are okay days, and there are bad days.  When people ask me how I'm doing I usually respond with "I'm alright," or "I'm okay today." But when I have the bad days, the dog days, the rough days, it's hard to lie. This is when I usually say something vague like "Oh you know, there are good days and bad days."  Unfortunately, I can't control when those days come. If I could plan them, I would choose days when I have no plans and it's raining, or days when I can just lay in bed. I wouldn't pick the days when I have family visiting, or I want to go out and see friends, or when I have plans to actually have a life.  Today was a dog day. Today was a 4 faints in 4 hours day. Today was a vertigo day. Today was a nauseous day. Today was a leg spasm day. Today was a brain fog day.  But today was also Father...

Sometimes, mostly on Twitter, I have a self deprecating sense of humor. A while ago I tweeted something snarky and jaded about my struggles. In my attempt to be funny but blunt I tweeted this:  And to be fair, I'm mostly right. When we are hurting we like to listen to music that we can relate to. That's why there are about a zillion songs about heart break. There I was, extremely frustrated with the state of my life and feeling extremely isolated. I have great friends but none of them understood what I was going through. My family is extremely supportive (trust me, there are days when I need to be escorted to the bathroom because I can't stand on my own. My sisters take turns helping me to the bathroom. That is love right there) but when I'm having hard days there is only so much they can do.  At the end of the day, I can listen to Taylor Swift when I need to wallow in self pity about my failed relationships. I can listen to Justin Timberlake when I need...

One of the cool (I use this word loosely) things about being in the Lyme community is that it is HUGE. Now on one hand this completely sucks because there are 300,000 new Lyme patients every single year and the majority of the political, social and medical world is ignoring us. But on the other hand, this means that even when I'm laying on the couch all day alone at home watching all my friends post summer fun pictures from all over the world, I know that I'm not really alone. I might be confined to my bed during the majority of the summer and my socialization might be limited to interactions with doctors and my caregiving family, but while reading blogs from all over the world (Lyme is worldwide, don't forget) and connecting to other people who are going through this too, I can keep a little bit of my sanity. So I've collected some of my favorite and most relatable quotes from other blogs about Lyme disease and Chronic illness. Here are a few. From  Maisie  of Lyme ...