*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.
Table of Contents
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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My neice has ME and your posts are not only well written but very helpful for a relative on the periffery.
Thank you so much for being someone in your niece’s life who tries to understand, and cares. That means a lot to her, I’m sure 🙂
Hi Lisa
Thanks so much for this article, it sums up how I feel ME is relentless it is part of our world, we may not choose to have it but we can choose how we deal with it. pretty much summed up in your statement “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”. Your writing is really relatable and easy to read so thank you!!! Let me know if you have anything that you have found really beneficial I have had ME for 20 years now but always strive to keep putting one foot in front of the other and not to give up!
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Thanks for the comment, Katie, and for sharing your own valuable thoughts and experiences! I will relay your message to Lisa for sure!
You are amazing considering all the things you have been through. You are an excellent spokesperson for those with “invisible” physical challenges (which also can affect the mind – it is, after all, part of the body). I am glad that you can do this because everyone needs to understand these types of challenges that do affect many people.
I have worked with children and adults with physical/developmental/emotional challenges for many years of my life (I will soon be 77) and it has been the work of my heart. Many times they have a combination of any of those three or all of them. My own brother came home from Vietnam 100% challenged, and that is what gave me the heart to do this work all my life. I think the “invisible” challenges are perhaps the most difficult of all to deal with because the average person cannot see something directly necessarily, so they don’t understand that it is a challenge. The most difficult challenge we have in front of us is to educate people. I have permanent PTSD and have had it most of my life so I do understand. Thank you for your great writing and I am glad that you can do something so worthwhile.
Hi Anne, I’m glad that Lisa’s writing spoke to you, and is also a voice for those with invisible illness or pain. You’re right that the invisible ones can be the hardest to deal with. Wishing you and your family all the very best xx