There comes a time when dealing with chronic illness where you might lose yourself a little. Whether it is because you feel like a shell of who you once were, or because, all of a sudden, the only things you can focus on are healing, it is essential to remember that your illness is not your identity. I think it’s easy to get tripped up in this part of the healing process. I can’t speak for everyone, but I truly believe one of the most crucial aspects of healing is taking back the parts of your life that make you YOU.
Hold onto the pieces that make you who you are.
Remember all of those things you did before you got sick? If you can’t remember because it’s been so long, think about all the things you are going to do when you’re feeling better. And I say when and not if because you ARE going to feel better and that day IS going to come. It can be difficult, but keeping a positive frame of mind is crucial in your recovery. Maybe you were really into the arts or theatre, maybe you were an avid traveler. Maybe you write or speak Italian or love, love, love this one band, or maybe you adore animals and volunteer at a shelter. Maybe it’s none of those things, but there are special things about you that are not your illness. I think this is a very important distinction we have to make when dealing with our illness: making sure that our illness does not become our identity.
You are not your illness. You are a writer, a runner, a chef, a movie-buff, an engineer, a scientist, an astronaut, a speaker, a teacher, a dreamer, a lover, a storyteller.
For instance, I do not think of myself as a “Lymie.”
I am not Lyme.
I am dealing with Lyme disease.
I am healing from Lyme.
I was diagnosed with Lyme.
But I am not Lyme.
And it is true, you will be immersed in your illness for awhile. Suddenly you are spending more time in online forums and Facebook pages than you are with anyone in real life. You are too sick to do anything, so you take comfort in the online community of warriors who are fighting the same good fight. You are a walking textbook of information because you have had to learn everything about your illness to make up for the doctors who know nothing. You will communicate more with your new friends who are sick than your old friends who are healthy.
I have made friends in the Lyme community, in particular, two girls I met through a Lyme Support Group, and we were all a lifeline for each other when we were all at our sickest. I love them with all my heart and they will always be dear friends. But, at one point, I started to allow myself some distance from the chat groups and the Lyme pages. I still frequent the communities for advice with occasional setbacks and to stay up to date with the folks who were always there for me, but while these places were a wealth of information and knowledge and support, sometimes they were also incredibly negative. And it made it easy for me to slip into victim mode amongst the sea of others also experiencing sadness and despair. And goodness knows I can’t fault them for that. I was there, too! This is life-changing shit! But I no longer wanted to see myself as a victim. I wanted to be a victor. I do not identify as someone who will ALWAYS live with chronic illness. I have been sick a long time but I won’t always be. I am on my way to remission and so are you.
This is who I was before illness: a runner, a performer, a singer, a writer, an explorer, a mediocre-ukulele player, a swimmer, a
brunch-going, dress-wearing, red lipstick aficionado, silly-spunky-quirky kind of woman child. And you know what? I STILL am all of these things. I am all of these things, and now…..well now, I am so much more.
I am a thousand times stronger than I ever could have fathomed. I still exist. This disease hasn’t killed me yet, though at times, very honestly, I felt like I was dying. But I have endured. I still exist. There is something to be said for the human spirit and our ability to withstand and endure. We are so much more powerful than we can ever imagine.
Now, I won’t try to sugar-coat it. It’s not all positive thinking and holding onto your pieces. It’s not all woo-woo ‘think yourself well’ mentality. It’s a lot of hard work. It’s a journey. It’s a life-altering experience and the road is long. There will be some awfully hard times. This time in my life was so frightening, I did not know if I would ever emerge from the nightmare that had turned into my life. I remember at one point, looking in the mirror and not recognizing myself. I stared in the mirror and I did not know the person staring back at me. I was lost and scared and empty and alone. So alone. Alone with my illness, alone with my thoughts. My mind was unraveling. I was unbearably thin, my skin was a pale sickly pasty white, my eyes were puffy and glassy and lifeless, and my hair was falling out more than I could ever remember. For having an invisible illness, at one point, I was so incredibly ill that my illness was incredibly visible. My organs would not accept any nutrients, and so even though I was trying to eat well, my body wouldn’t accept the nourishment I was trying to giving it.
And it wasn’t just my looks, it was my personality. I remember telling my close friend, in tears, that I was afraid I was losing myself, losing my personality. It was incredibly scary to not even recognize who I was as a person anymore. I never laughed – possibly hadn’t laughed for months, didn’t smile, could barely socialize, too much stimulus could cause a neurological Herxheimer reaction. I simply was not me. I was someone else I’d never met. I was a wisp of my former self. A muted fragment. It became difficult on friendships and distressing on my soul.
The strange thing is, after fighting chronic illness, and in my case chronic Lyme and co-infections, you do not emerge from battle exactly the same. Wiser, of course, maybe more appreciative, stronger, more empathetic, perhaps even a bit more weary, but you cannot go through something like this and not change. I will not venture to say I am a completely different person, but I am not exactly the same person I was at the start of this journey. Not worse or better, just different.
…At one point, I knew I was coming back…
It did not happen overnight. And I cannot lie, I experienced more loss and sadness in those first two years after my diagnosis than I ever had in my entire my life, but I somehow found hope and I held onto it for all I was worth. I fought for my life.
I remember looking at myself in the mirror, maybe six months or so from the time I could not recognize myself, and I caught my breath…. because there I was. Beneath it all was the person I’d always been. My face, my heart, my shell of a personality exploding back to fullness…It was like slowly recognizing an old friend. And I smiled, because I had not disappeared completely, I had only gone away for a little while. .
I wrote on the mirror in a dry erase marker:
“Hello, there, it’s me again…”
You will come back. You are not your illness. You are a writer, a runner, a chef, a movie-buff, an engineer, a scientist, an astronaut, a speaker, a teacher, a dreamer, a lover, a storyteller.
And you will live your story again.
Trust in that.
