3 Lessons from Living with an Invisible Disease
Being diagnosed with multiple sclerosis (MS) changed my life. At 27, it was not necessarily a welcome diagnosis – one that came with far too many unknowns and potential grim outcomes.
If I’m being honest, I’m lucky enough to live most of the time in unaffected by the disease. But, when I reflect on this journey of living with an invisible disease, I see I’ve learned some valuable lessons that have filtered into all aspects of my life.
Lesson 1: Focus on what you can control.
MS is not only an invisible disease – it’s also unpredictable.
No one knows what causes it. No two cases are the same. No treatment plan works for everyone.
Every disease progression is different – and there is no way to predict if you will experience a life-altering flare or simply live with symptom management for life.
When I was first diagnosed with MS, it was very easy to get lost in the spiral of ‘what-if.’ What if I lose my mobility? What if my cognition declines and I can’t take care of myself? What if??
But, what if not?
The reality is – I can’t control how the disease progresses – as much as I want to. And worrying about all the potential scenarios is not helpful, pleasant, or productive. Over time, I’ve learned to focus on what I can control – my diet, my exercise, stress management, my response to thoughts and fears.
As is the case with many things in life, I may not be able to control MS, but MS does not have to control me.
Lesson 2: Take nothing for granted.
I’ll never forget realizing something wasn’t working right in my brain. I was trying to explain to a student how to graph something on a graphing calculator and I kept hitting the wrong button – over and over. I looked at him and he looked at me – both of us confused. I mumbled an apology and mustered all my focus to complete the steps correctly.
It wasn’t until later that I learned my handwriting was illegible for weeks on end. And that my roommate was concerned because I wasn’t able to formulate meaningful responses in our evening conversations. And there was a moment my friend thought I was driving drunk because I couldn’t stay in the right lane.
I had no idea.
I lost control of one side of my body and a large part of my cognition in only a matter of days.
It was incredibly scary, especially once I regained full awareness and realized how bad it had truly gotten.
I couldn’t live in fear. But, I couldn’t deny the reality that it may or may not happen again. How do I live in this place of not knowing?
With gratitude. For every moment I have full function. For every day I can problem solve. For every time I can engage in a meaningful conversation.
I sometimes have to choose to notice what I can do and what is working, but it’s a choice I make with intention – because I know it can all be lost in the blink of an eye.
Lesson 3: Look beneath the surface.
People often tell me how much they admire my self-control. They don’t know how I can eat so healthy all the time, never eat non-Paleo sweets, or leave the bread in the basket at restaurants.
Too many times I’ve heard “You must be so dedicated to your running. I only exercise so I can eat this stuff!”
I try to kindly thank them, but sometimes I follow-up with something to the effect of “It’s for disease management,” and then they don’t know what to say. Because they made an assumption.
I look healthy. I run a lot. I eat healthy. I’m young-ish. I must be fine.
But, really, there’s something beneath the surface. There always is.
Living with MS has taught me to look deeper, to listen differently, to simply be with, and to not make assumptions. None of us know what is to come and few of us know all the places another has been.
May we all choose to focus in each moment on what we can control with a sense of gratitude and openness for each moment with which we are gifted.