Lessons I've Learned Living with a Chronic Illness
“In order to rise / From its own ashes / A phoenix / First / Must / Burn.” — Octavia E. Butler, Parable of the Talents
And burn I did. All over, in fact. Because for most of the day, everyday, my whole body ached. It wasn't like any type of ache I had ever felt before. If anything, it was most akin to that to-the-bone-ache a person gets when they have the flu. But unlike with people who get the flu, this ache never seemed to fully go away. I cannot exaggerate the depths of suffering I experienced during my most severe days with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). All I can say is that it felt like my whole body, brain, mind, spirit and life had been completely destroyed - burnt to smithereens - and at that time I was unsure if anything would ever resemble 'normal' again.
Now that I am on the other end of the storm (which I am truly grateful for - many with ME/CFS never recover and many live with worse symptoms than I had), I can now look back and see how much having the illness was a blessing in disguise, albeit a twisted, cruel one. At the depths of my suffering if anyone had told me that it was all for the better, I would likely have a few choice words for them. Being on the other end, I can see that I am a stronger, more empathetic, caring, and happier person in general. These are some of the lessons I learned along the way:
In Buddhist culture, releasing a floating lantern into the sky represents optimism and new beginnings.
What We "Do" Does Not Determine Our Worth
I will never forget the moment. I was sobbing, like really SOBBING, uncontrollably in my friends backyard. I had just lost my job as a result of my physical limitations. At that moment I felt I had lost everything. My hobbies, friends, even some family members were estranged because they did not understand my illness. I felt like my whole purpose, everything that had made me "me", had been taken away. I felt like I had no worth or value to contribute to the world. My friend, who just happened to be holding her few-month-old baby told me something that changed the way I looked at self-worth. She asked me, "Do you enjoy Laila?" Yes. Of course. She's a baby. Most people enjoy babies. They are sweet and cute and make people laugh. "Well, Laila doesn't do anything. NOTHING. In fact, she has to have everything done for her." Yeah. So? "She brings joy just by EXISTING. Just by EXISTING she impacts those around her. You don't have to DO anything to have worth. You have worth and impact others just by your very EXISTENCE." HUGE LIGHT-BULB MOMENT. Something just clicked for me that afternoon. I stopped trying to prove my worth through doing and started recognizing my worth through being.
Some People are Just Never Going to get it - EVER
When I first became ill it frustrated me beyond all high heaven that so many people did not understand my illness and, in some cases, didn't even believe it was real. I would spend SO MUCH of my already limited energy trying to gather resources and peer-reviewed scientific articles to try to prove myself to them. The thing is, they had already made up their minds. They weren't going to listen. I realized all the energy I was wasting on them I could be focusing on me and my recovery. Because of this experience, I no longer waste my time and energy to prove myself to people who have already made up their minds about me and I am a whole heck-of-a-lot happier because of it.
The Little Things ARE the BIG Things!
Okay, I know we have all heard it a thousand times over, "be grateful for the little things". As a counsellor I knew it was important, but popular culture had watered it down so much that it was diluted to the point of being tasteless. When I was sick and had lost everything, nothing was left BUT the little things. Like clean sheets in the bed, a solid belly-laugh with my partner, or how my dog Daisy's tongue protrudes half way out of her mouth when she sleeps. It was these things that I used to over-look that started to bring me joy, and for that I am truly grateful. Today I am a much happier person over-all as I am able to savour all the "little" joys, filling myself up with good feels throughout the day.
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” — Haruki Murakami
I hope this blog has been helpful! If you have any questions or comments, please don’t hesitate to reach out. If you are interested in a personalized counselling/coaching program to assist in your journey, contact me at firstname.lastname@example.org or 1-403-650-5750. You can also book a free 20 minute phone consultation on my online booking page.