During my childhood and adolescence, I had what most people would call a “normal experience” as far as my health was concerned. Other than the occasional cold, or a case of annoying seasonal allergies, I was fortunate enough to have gone through each major experience without worrying about getting sick.
Then, in a strange and sudden turn of events just months shy of my 21st birthday, I was diagnosed with a rare autoimmune disease that resulted in varying levels of constant, chronic pain.
With the exception of taking a yearlong medical leave from my full-time job and school due to numerous illness-related hospitalizations, I have managed to keep a relatively balanced social, romantic, and professional life ever since receiving my diagnosis.
Living a full life, maintaining lasting relationships, and remaining productive at work with chronic pain are challenging feats even for someone who is in perfect health, let alone a person dealing with an invisible illness. Here are four ground rules I have created for myself to ensure that I am able to live mine to the fullest without putting myself at risk for a major health crisis.
1. Drink plenty of water
It’s imperative that I remember to drink lots of water throughout the day, from the moment I wake up to when I lay down at night. It’s often recommended for women, adults 19 years and older, to drink 2.7 liters a day, while adult men should drink 3.7 liters.
Tip: Keep a travel-sized bottle in your bag and find the nearest water fountain everywhere you go.
2. Get a good night’s sleep
Having a fully booked itinerary most days, as well as a thriving career and relationship, require a good balance of who, when, and where to disperse my precious energy. That is why I always try to prioritize a full night’s rest in order to truly enjoy the events that I plan on attending. Making time for a full 7 to 9 hours each night goes a long way to not only prevent an even weaker immune system, but also give me a boost of attentiveness for future conversations and gatherings.
Tip: Utilize the night shift mode on your phone and set the bedtime alarm to remind yourself when to wind down every night at a decent time
3. RSVP ‘no’
Having lived years with chronic pain while managing an active social life has been learning to perfect the art of saying ‘no’ and declining some invitations — again, the FOMO struggle is real! In an ideal and pain-free world, I would love to say ‘yes’ to every happy hour and be at every party.
However, it is imperative to my health to skip some things and leave a little time in the calendar for myself.
Tip: We all need alone time. Activities like yoga, writing, meditating, walking, and going to a coffee shop are ways that I like to practice self-care and decompress in order to keep my chronic pain at bay.
4. Take a breather
Chronic pain has a way of showing up at the most inconvenient moments. While most social settings don’t allow for much personal space, it’s imperative to find a safe place in an event for a quick escape to regain peace and quiet. Sometimes, it’s the bathroom stall and sometimes, it can be outside of the venue. Wherever it may be, I like to identify my safe place as soon as I arrive.
Tip: Find your safe place whenever you’re going to a big event. This is where you’ll go to take a breather whenever you feel overwhelmed.
Without the right mindset, maintaining a social life through chronic pain can feel like a burden — but it doesn’t have to. I like to embrace the things I cannot change and look at my situation as valuable moments to practice gratitude for what and who I do have in my life.
Sure, an invisible illness is no fun, but learning to follow some ground rules for myself has been the biggest gift I could give myself for choosing to live fully and with no regrets.
