20 lessons from 20 months of chronic illness

From learning the true definition of “resilience” to breaking down the social construct of “needing to stay on track in life,” here are my thoughts on what I’ve gained (and lost) while living with a chronic illness

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If you know me personally, you’ve probably heard fragments of my chronic illness journey.

I’ll spare you the details (and time), but to be concise, I became extremely sick during the first semester of my freshman year of college — definitely wasn’t the new, transforming chapter I was envisioning for myself — and now have been diagnosed with several chronic illnesses.

My journey has been anything but linear — months of medical mismanagement, doctors telling me that it was just me being a “stressed female college student,” and the roller coaster that chronic illness is. The past 20 months have been turbulent to say the least — think the airplane seat belt sign being stuck on and having no announcements from a captain reassuring you that “everything is going as planned.” Sometimes I feel like nothing has.

I didn’t expect my health to get taken away from me at 18. Making plans with my friends turned into making weekly appointments to see the next infectious disease specialist or neurologist (my main social interaction at that point). I definitely struggled physically, socially and emotionally and to be blunt, I lost a lot of friends that didn’t want to hang around the “sick girl”, hobbies I didn’t have the energy for anymore, and overly ambitious plans that I had envisioned for myself.

But, I gained a lot too — resilience, vulnerability, strength, wisdom and a whole lot of lessons that I never would’ve learned (at least at this age) otherwise.

I’m extremely proud of the person I am today, not because of my illness, but in spite of it. I’ve learned how to speak up for what I believe in, challenge paradigms I had trusted my whole life, and turn my hardships into fuel.

Here are 20 lessons from 20 months of chronic illness:

1. Invisible illnesses are very real. Just because someone doesn’t look sick, doesn’t mean they aren’t.
2. The best medicine is the outdoors, human connection and a scoop of (dairy-free, sugar-free) ice cream.
3. Celebrate the little victories — they may be milestones for others. Every accomplishment of yours deserves to be recognized!
4. Sometimes you will get so sad, frustrated, disappointed, and upset about the cards you’ve been dealt. But you will pick yourself back up, time after time, and turn your pain into purpose.
5. The idea of “staying on track in life” is a social construct. We are all on our own paths and sometimes things don’t go as planned that are out of control. It’s okay to fall off your path sometimes — switch routes, go a little slower, or even do a 180. There is no one way of living — and we shouldn’t hold ourselves to that standard.
6. Some days are just bad days. Better days will come. To be honest, I’m still traumatized by the times I’ve spent sitting in the ER waiting room trying not to go unconscious or laying on the bathroom floor of my college’s math building because the overwhelming nausea hit me every day 15 minutes into class. I still pulled myself out of bed and tried my best every day, but sometime’s it’s not enough and that’s okay.
7. Take care of your body and mind — physically, emotionally and mentally. When there is no health, nothing else matters in that moment.
8. There is so much strength in vulnerability and asking for help or support.
9. Find the joy in the simple things. I’ve found great appreciation in my daily activities — doing the daily word jumble, going on a walk around my neighborhood and treating myself to a milk tea.
10. Keep in touch with the people you care about. If you’ve lost contact with someone you care about, it’s never too late to reach out again.
11. You are your own advocate. No one knows you better than yourself and you deserve to be treated with consideration and compassion.
12. You are never out of time to accomplish something. Life is not about watching the hourglass run out — it’s learning how to adapt and be resourceful.
13. Resourcefulness. In freshman year, during the months I had migraines almost everyday, I was meticulous about organizing and completing all my homework, study time and responsibilities a week ahead of time to give myself the space to take a break. This is how I maintained my 4.0 GPA at Georgia Tech and have continued to even after my migraines resolved.
14. I’m thankful for my family. I believe that learning how to express my emotions, struggles and need for help has brought me closer to them than ever before.
15. Some friends weren’t meant to be. When chronic illness temporarily strips away all the activities or traits that make you “fun to be around,” some people will leave. Maybe it wasn’t a good fit anyways.
16. Resilience means sprinting forward even though there are mountains ahead. But it also means just sitting there and waiting out the storm.
17. Make sure to thank others and make them feel appreciated for the things they do.
18. Productivity is not measured by the things you do or the success of others. Being busy to the point that you are miserable is not productive.
19. Being isolated and having to adapt to circumstances outside of your control will come in handy if a worldwide pandemic ever chooses to barge into your life (2018 Mira had no idea of what was about to come). This kind of loss is familiar to me. Learning how to be happy with what I have and finding peace in being alone has definitely prepped me for COVID-19 and the years to come.
20. Letting go of the path you envisioned for yourself. It’s really, really hard. To be honest, I’m not completely there yet. I’m still struggling to let go of the idealized version of my life I had, and still grieving the future I’ve hadn’t even obtained. I’ve always been such an ambitious, hardworking, “go go go” person. It takes courage to take a step back and re-evaluate your place in the world. It’s uncomfortable and it’s scary, but we grow the most in these times.

That’s my two cents on the past 20 months. Hopefully you resonated with a thing or two (without having to go through what I did to learn them).

I wouldn’t have ever wished to have such a monumental challenge get thrown my way. Everyday, I used to wish I was healthy and “normal” like every other college student around me. I still wish for my health every day of my life, but I have no desire to be “normal” again — for I have grown into a more empathetic, curious, passionate and dedicated version of myself. I wouldn’t change that for anything.