*Note from A Chronic Voice: Lisa does have a way with words, as she pours her heart out into this powerful piece about M.E. (Myalgic Encephalomyelitis) and her struggles with it. She is a regular contribution on this blog, and I always look forward to what she has to say. The coping strategies and knowledge she share are articulate, and her experiences intimate. Gain inspiration from this beautiful tribute to the human spirit.
The Ride with Me
It’s been a few years that we have been on this journey together. We have had our ups and we have really shared some downs. (I could have done without those!) It’s been a bumpy ride together to say the least. For a while there, I thought I lost me to you. Sometimes I still think I have lost me, or parts of me, but then I realized that it really was just some of the things that I thought defined me that you had taken. However, a long drive and some time sitting, pondering lakeside, I realized that you haven’t taken a single thing away that has defined me. I was giving you too much power. And sometimes I still do. But ME, it’s time you knew your place in my life. You aren’t me, you are simply M.E.
M.E. and What I Let it Do to Me
M.E. is a multisystem disease that affects the neurological, endocrine, immune, and energy metabolism systems. It affects 17 – 24 million people globally, with most people affected being women. Anyways, that sounds like a mouthful but what does it really mean? To me, it’s meant a whole lot. In particular, the neurological component is a real kicker. That’s where M.E. really has tripped me up.
I graduated from law school with top honors (magna cum laude!). I have since achieved a mini-MBA and have become a successful certified coach. School, and more importantly, knowledge and the passion to learn has always been at the heart of who I am.
Then along came M.E. and it made me forget things. It’s made me forget where I parked my car, what someone’s name is, why I called someone, what I ran upstairs for…the list is endless. I felt like I went from being a relatively intelligent person to one that stumbles through the simplest of tasks.
It made me doubt myself, lose confidence in my ability to operate in the world, and most of all, it made me feel like all I had worked for, the degrees I earned, and the knowledge I gained throughout the years has vanished. It made me feel like people would no longer look at me the same way or look at me as less than in some way. I know so many of these things are small things but my emotions tell me they may lead to bigger things or that a minor slip up could cause a larger misstep.
(Read: Grieving the Life That I Will Never Have)
When I Realised What was Happening to Me
The biggest takeaway for me here is that I let M.E. lose confidence in myself. I LET IT DO THIS. And when it comes down to it, that’s what this all boils down to. I’ve always been confident in my abilities to get through any challenge, every challenge. But M.E., you’ve made me question if I can do that anymore. Well, those days are over.
In reviewing my list of “issues,” I realized that everything that I’ve named above really is life’s small stuff. Yes, it’s chipped away at my confidence. But that’s on me – I’ve let it do that. The emotional side of me has blown up these moments to the what-ifs that they are not. While one could say that I’m being sensible or pre-planning for what may lay ahead, one could just as easily say, slow down. You are not there now or perhaps ever.
I am Still Me Deep Down Inside
When I really think about it, I am still the same person that graduated law school with top honors. Give me that challenge again and while I may have to work a bit harder, I know I can still do it. My legal knowledge is still fully intact.
When it comes to coaching, M.E. has actually helped me become an even better coach. The variety of experiences that come with living and working with a disability have made me a stronger, more well-rounded coach.
Yes, M.E. will still knock me down like a punching bag day in and day out, but I will keep coming back for the next round, because while it may be giving me a few new scars in life, there’s beauty and insight that comes with those scars that have compensated for the day-to-day challenges it has given me.
The Difficulty of Living with M.E. on a Daily Basis
I think the toughest part of this all is that these little things happen daily, there’s no forgetting about M.E. So, it easily becomes an insurmountable mountain that I’m reminded of daily. However, the reality is that while M.E. travels on my life’s journey with me daily, it is not me and it’s not that big. It is simply M.E.. It can’t take the essence of me. And I most definitely won’t let M.E. take away the gratitude, joy and happiness that dominates my thinking. M.E. may win the battle some days, M.E. may make me cry in grief at times, but M.E. will never, ever will win the war. Why? Because I won’t let it. Me is stronger than M.E. M.E.: Learn it, know it, believe it. You will not win.
While this has been one part of my specific experience with M.E., I’m guessing many others of you with chronic illnesses have encountered similar feelings. For me, the key is to keep in mind that our diseases do not define us or own us.
How I Cope by Being Thankful
They may travel with us daily, but so does our faith and belief in the greater good. And while it may not always seem that way there is so much to be thankful for out there – whether it’s the relationships in our lives, the jobs we may still hold, the pleasures we can still partake in, and the opportunities to give back that exist, we still have so much.
Yes, we have lost some of our “favorites” – but there’s still so much left. So much opportunity, so much to contribute to life and the lives around us. Dare I say, we may have even become better versions of ourselves along the way?
Fighting a daily battle does something to a person; it makes us stronger, more resilient, and for me has really made it easier to not sweat the truly small stuff. Perspective is everything and M.E. has definitely given me that. From me to you…
*Note: This post is meant for educational purposes, and is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
Read More from Lisa: Find Your Way Back to Happiness with a Chronic Illness
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Lisa M. Alioto is a lawyer, career coach, and Myalgic Encephalomyelitis warrior with a strong belief in the power of positivity! She primarily focuses on writing articles about ME, along with invisible and chronic illnesses in general, with the goal of increasing awareness and providing hope, help and support. She is also the Vice President of the MN ME/CFS Alliance. Find her here: Facebook & Twitter.