Meet Mazzy, a courageous chronic illness warrior. Mazzy shares her journey with gastroparesis, from the initial challenges and overwhelming moments to the discovery of joy and strength in the face of adversity. Discover how compassion, vulnerability, and a strong support system helped her navigate through the toughest times and embrace a life worth fighting for every single day.
Continue reading to learn more.
What were some initial challenges you faced after your diagnosis, and how did you overcome them?
I had Gastroparesis symptoms for several months before I was actually diagnosed and the majority of that wait was due to COVID and quarantine. I became malnourished and dehydrated which led to a 2.5 week admission, where I was finally diagnosed.
Some initial challenges I faced initially were learning how to manage a feeding tube at home and then about a year later learning how to set up and administer total parenteral nutrition (TPN) every night.
On a more psychological level though, I had to deal with doctors still referring me for eating disorder evaluations and telling me they didn’t want to take chances in my treatment plan because they were uncomfortable taking responsibility in my complex case.
Furthermore, I was forced to grieve the life I wanted to live with the ease that my peers were privileged to thrive in. I was forced to limit myself to only what my body could reliably manage.
Through this though, I have learned that compassion and vulnerability go a lot further than academic success. I have learned that we all have our own pace for going through life and that my voice is powerful. I know how to advocate for not only my needs, but for the needs of others in my life. I have become a role model for other people, both younger and older, who are dealing with difficult seasons of life, and most importantly, the power of a strong support system.
MOMENTS OF JOY:
How do you find moments of joy and positivity in your day-to-day life despite the difficulties of living with Gastroparesis?
My life became less about finding moments of joy and more about actively seeking joy at least once a day after my diagnosis. Simple ways were with medical accessories such as medical accessories and adaptive clothing that brought awareness to gastroparesis. This helps lighten the mental load a little bit for me.
I have found people through instagram who also have gastroparesis and became friends with them because they understand me on a deeper level. I started going to therapy where I learned the importance of ‘having big things you’re looking forward to as an incentive when things feel unimaginably hard’. It’s about taking risks and seeking spontaneity in an environment that requires calculation.
I still attend school, and go to concerts, and spend time volunteering as a counselor at summer camp, and I maintain a part-time job that I love. I have learned the productivity of rest and how to adapt my life to support a body that I have to wake up and choose to fight for AND against every single day.
Don’t get me wrong, it has taken years to get to this spot and learn what my limits are, but despite continuously getting news that my condition is worsening and my treatments are failing, I am the most mentally stable I have felt in a long time and I am still so grateful for what I can manage on a day to day basis.
What advice would you give to someone recently diagnosed with Gastroparesis and feeling overwhelmed? Share it as a heartfelt letter, starting with #DearWarrior.
Take a deep breath. You hold more power than you know. You are capable of doing hard things, even though I know you wish you didn’t have to. You know your body better than your entire care team combined. You are facing a battle you could never have been prepared for. You are not alone.
You are allowed to cry and be upset with your new reality. Nutrition is the most vital aspect of your recovery. Whether it’s the five to six small meals a day, nutritional shakes as supplements, endless vitamins, tube feeds, or TPN, you are not a failure. Fueling the fight can be the most difficult part.
Now is the time to assemble your support system. If you don’t have one, do not be afraid to reach out to fellow warriors on social media or through support groups. Remember that your voice is powerful and it’s okay to be persistent in seeking care when it feels like your medical team isn’t paying attention.
Find some hard candy or a fun drink you can tolerate and treat yourself, because you deserve it. And don’t be embarrassed or ashamed to ask for help. Find a person to manage medical things for you when you’re not strong enough to do it yourself.
You are more than this disease. Play your favorite songs, watch your favorite movie, and remind yourself that it won’t feel this hard forever. You’ve got this.
Interested in learning more about gastroparesis? Check out:
- Gastroparesis Diet: What To Eat During a Flare?
- TPN Journey: How I Learned To Accept My Feeding Tubes
- What is a PICC Line?
- 5 Important Self Care Tips For Chronic Illness