1. Do you have a primary diagnosis, if so, what is it?
A: Yes, my main illness is Gastroparesis.
2. How long did it take you to get diagnosed?
A: A month, due to my own research and requesting certain testing be done.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: Confused, in disbelief, numb. I left the GI office with a piece of
paper stating my diagnosis: gastroparesis. In the office, my GI doctor
had only told me that I had it but literally did not say anything else
about it. He told me to read the information he gave me and sent me on
my way. In my car, I looked down at the definition of the diagnosis
and one word jumped out at me: chronic. I was under the assumption
that whatever I had would go away. It hadn't even crossed my mind that
whatever I had I would live with the rest of my life. I also was not
prepared to learn it can cause rapid decline. I was in such shock, I
didn't do anything. I just drove home with my mom in silence.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Join chronic illness communities and talk with others. Learn their
symptoms and diagnoses. Ask questions and see if your experience is
similar. If you suspect you may have a certain illness, request those
tests be done by your doctor. Don't take no for an answer. I wouldn't
have gotten diagnosed so quickly if other chronic illness warriors
hadn't recommended an upper endoscopy and GES.
5. Has your chronic illness changed your perspective, and if so, how?
A: Yes. Being chronically ill has made me incredibly more empathetic
and compassionate. It's taught me patience and understanding. It
changed the way I look at other people and the struggles they may be
6. What moment are you most proud of in your chronic illness journey thus far?
A: My doctors all said they didn't think I'd ever be able to finish
college. Not only did I graduate, but I did it with honors. I
graduated against all odds.
7. What was your hardest (or lowest) moment, mentally and/or
physically, that you’ve been through on your journey
A: My hardest moment was getting my first feeding tube not even a year
after getting sick. I was so underweight, malnourished and ill that I
had an incredibly difficult time recovering. After my placement
surgery, I needed a re-placement surgery just two weeks post-op due to
complications. While in the hospital I also caught the flu which made
recovery even harder. I was in and out of the hospital for months and
struggled through each day just to stay alive. My anxiety and
depression were so out of control that nothing was helping. I was
honestly at a point where I just wanted to give up. But I didn't, and
I'm so glad I made it through with the love and support of my family
and care team.
8. What or who has helped you the most during the lowest days?
A: I would not be here without my parents. They have taken on so much
mentally, physically and financially while never making me feel like a
burden or a bother. My girlfriend has also been a huge source of
support. She is now my main caretaker and never questions my
limitations or makes me feel different because of my illness. And
possibly the most important person that has helped me throughout my
chronic illness journey is my therapist. She has gone above and beyond
what any doctor does to make me feel safe, sane, and comforted. She's
squeezes me in for last minute appointments, takes my phone calls
whenever I need her, and even visited my house (over 30 mins from her
practice) when I was too sick to leave my house. I like to think of
these four people each as a pillar holding up a corner of a house.
Without these people, the house (my life), would crumble and they work
together to keep a strong foundation.
9. If you had any words of advice for someone struggling with a
similar diagnosis, what would they be?
A: You are not alone. It may feel like you are but there are other
people out there who have gone through what you're going through. Find
them and cherish them. Whether you meet someone with the same illness
as you online or through a support group, having someone who knows
exactly how you feel will change your world.
10. What would you like the world to know about life as a chronic
A: We didn't ask for this. We did nothing wrong. We don't want to be
sick. Yes, we've tried that. No, there's no cure. Yes, we know "it
could be worse". We are still worthy of respect, kindness, love, and