What the Pamphlets and Documentaries Didn't Tell Me About Life With Chronic Illness

Most of the time, a chronic illness diagnosis is accompanied with medication (a lot of it), a vague timeline of when you might feel some relief from the ever-present symptoms, and an overwhelming amount of jargon not really explaining anything clearly.

When I received my diagnosis of chronic Lyme disease, I was given a pamphlet and directed to a documentary that chronicles the harsh reality of the illness I would be facing for the rest of my life. It was all extremely overwhelming.

I watched as people transformed from fully-functioning beings into those who couldn’t walk, talk, eat or even breathe on their own. Doctors were losing their licensing for treating patients under this diagnosis, and the lives of these people were altered in way I could never explain.

It wasn’t until I was well into navigating this illness that I heard the voices of hope whispering through the ringing in my ears.

Here’s what I wish they would have told me sooner:

You’re going to lose parts of yourself, but who you are will never falter. 

Because of the way this disease works, you will no longer be able to use your joints in the ways you once did. It will take less than six months for your passion of being a musician to no longer be a reality. You can’t change it, you can’t stop it, you can try to fight it to the very end, but eventually you will lose.

This will not change who you are. You will still be creative, you will still be passionate, you will still be be you.

You won’t live the life of an average college student, but you will learn more than any degree can teach you.

The straight-A honors student you once were will get lost in all the brain fog, pain and memory problems. Your grades will slip until you’re forced to drop classes — and then semesters — until school is no longer an option. This does not mean the time was lost. You will learn how to listen to your body, you will learn to exercise your brain in ways conducive to your limitations, you will still be you.

People will leave you because of this illness, but you will form friendships to last a lifetime.

Some people can’t understand — or choose not to understand — what it is you’re going through. Many will drift away, others will turn and run, and for most you won’t ever get a chance to change it.

This does not mean you are alone, no matter how lonely it feels. You will be available to invest deeper into the ones who stay — and allow them to invest in you, you will meet truly compassionate individuals, you will still be you.

You’re going to struggle through days — or years — of constant pain, but you will still have an adventurous spirit.

The symptoms will begin slowly, creeping from the inside out, until one day there’s a new normal with new joint damage or constant aching and tenderness. You’ll spend more time in bed than exploring the world outside and give up on attempts to explain how you really feel when people inquire.

This does not mean you will lose your sense of adventure. You will learn to find joy in the little things — the touch of grass, the warmth of the sun, you will be thankful for days when the pain is less relenting — and do incredible things despite the pain, you will continue to share vulnerably in order to share your story, you will still be you.

This disease will force itself into every crevice of your life, but you will not lose hope.

As treatments fail, this disease will spread through your body attacking each and every cell. Your days will revolve around alarms and reminders to take supplements, push IVs, and administer countless remedies. You will be forced to accommodate your own disabilities, ignore naivety from those who choose to judge the invisibility of your illness, and fight for validity with the world of Western medicine.

This will not steal your hope. You will learn to appreciate those pills for giving you some relief and hopes of remission, you will embrace those disabilities as part of your uniqueness, you will push yourself toward transparency in order to turn those who are naive into allies, you will join other warriors in order to make the voice of chronic illness louder than it’s ever been before, you will still be you.

Your life will seem like it’s shrinking, but my dear, just the opposite is happening.

As this disease stamps its seal on your life, what was once important will no longer seem relevant; it will feel like your world has fallen away.

This is far from the truth. You will learn how much your world has expanded, you will appreciate the life you’re able to live, you will experience it on a deeper level than the majority of those around you, you will still be you.

And when you’re afraid to look in the mirror because of the change you’ve experienced, just remember the words of Carl G. Jung, “I am not what happened to me, I am what I choose to become.”

Follow this journey on This Kate Lives.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.