Molly McCarthy: Thriving with Sjogren’s
It’s been almost two years since I was diagnosed with Sjogren’s. It all started out at the beginning of my junior year of college. I was super tired, anxious and emotional, and getting sick all the time. I simply wasn’t myself, and my mom insisted I have my doctor run something more than the usual blood panels.
Due to my constant illnesses, she ran an immunodeficiency panel. Some of the levels looked weird so she sent me to an immunologist, who ran more tests and got more weird levels. He then sent me to a rheumatologist, who ran even more tests, and came up with the diagnosis: Sjogren’s Syndrome.
I was in such bad shape at that point that I had to leave college, move back home, and literally take a few months off from life. I had spent so many months pushing through life, trying to pretend there was nothing wrong with me, and my body just gave out. But I’m happy to report that I am now finishing up my college degree with online classes, working part-time at a job I love, and making the most out of life!
What three words would you use to describe yourself?
Passionate, positive, and resilient.
Could you explain Sjogren’s to those who don’t know what it is?
Sjogren’s (pronounced show-grins) Syndrome is an autoimmune disease. With an autoimmune disease, the body’s immune system goes into overdrive and starts attacking healthy cells. Sjogren’s is usually characterized by dry eyes and dry mouth, as this condition particularly attacks the moisture producing glands in the body. However, it can also lead to fatigue (which is my main symptom), joint pain, or attack various organs in the body.
What would you like others to know about Sjogren’s?
What I want others to know is that Sjogren’s fatigue (or fatigue from any chronic illness, for that matter) is extremely debilitating. It’s not the type of tired you get from staying up a little too late one night or pushing yourself too hard throughout the day. It’s the type of fatigue you get when you have the flu and you can feel it in your bones. It’s a mind, body, and soul type of tired.
Some people can’t fathom why I wouldn’t be able to live at college, or work a full time job, or go on a big trip with all structured activities. But it’s because I can never predict when I’m going to need time to rest or nap, and when that time comes along, I’m going to need to rest or nap right away! It’s hard when your fatigue isn’t taken seriously, or people think you’re just lazy.
Is there a quote, phrase, or mantra that you live by?
Yes! “Respond to every call that excites your spirit” – Rumi.I think if you listen to your heart, or your gut, or your intuition, or whatever you want to call it – it will tell you what you’re meant to be doing. If an idea pops into your head and gets you really excited, pursue it! Go for it! No matter how crazy it is. The worst that can happen is it doesn’t work out.
Respond to every call that excites your spirit
Lately I’ve also been a big fan of “a little each day goes a long way,” which is a play off of something I saw Venus Williams say in an interview (she has Sjogren’s too!). Sometimes my to-do lists overwhelm me when I’m in a flare because I don’t have the energy or motivation to get anything done. But then I remind myself that doing one little thing is better than doing nothing!
How do you pick yourself back up on the bad days?
It can be really, really hard to get out of a rut. When my Sjogren’s flares, I can go days or weeks without leaving the house, or really even the couch. My two best pieces of advice are: change your perspective, and take really good care of yourself!
I like to change my perspective both mentally and physically. Practicing gratitude profoundly changes my mental perspective. It’s humbling to realize that even though I have this illness that makes me miserable sometimes, I still have so many amazing blessings in my life! For changing my physical perspective, if I’ve been sitting on the couch all day, I’ll move to another room (perhaps sit at the kitchen table) or even better – go outside for a bit!
In the early days of my diagnosis, one of the only things that kept me sane was nighttime drives with my mom, who would drive me around aimlessly while I cried and ranted about my life. Getting out of the house for a bit after being cooped up all day was a Godsend - a change of scenery always helps!
I’m also a huge proponent of self-care – whatever that looks like for each individual. Gentle yoga, hot bubble baths, and reading a good book are some of my go-to’s during a flare.
What’s your best advice for someone who just got diagnosed?
Hmmm there are so many things I could say here! But my number one piece of advice would probably be to learn as much as you possibly can about your body and your disease, but to simultaneously not get too caught up in numbers, statistics, symptoms, etc. Knowledge is power, and by knowing as much as you can about your medical illnesses, you can better advocate for yourself and take care of yourself. However, everyone is so different and you have to remember that your experience is not going to be exactly like anyone else’s (so stay off the message boards and focus on credible medical sources!).