1. Do you have a primary diagnosis, if so, what is it?
A: Yes, Cystinosis
2. How long did it take you to get diagnosed?
A: Almost 2 Years.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I couldn’t comprehend my diagnosis or anything that was going on for that matter, as I was only 2 years old.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: 1. Find a doctor who will LISTEN
2. ADVOCATE for yourself, use your voice
3. Do your own RESEARCH
4. NEVER, EVER GIVE UP
5. Has your chronic illness changed your perspective, and if so, how?
A: Oh 100%. I value the little things much more than a “normal” person. I developed a great sense of empathy towards anyone going through hardships. I also tend to look at my life as though it’s been shortened (sadly); in the back of my head I keep going back to the fact that my life expectancy is shorter than most, so I kind of put my life into fast forward. I had graduated college by 2014, started my career by age 21, moved out of my parents place as soon as I turned 18, bought a brand new car at age 19, etc. I push myself too far, too fast because in the back of mind is a voice saying “you won’t be healthy enough to accomplish your goals in 10 years time”.
6. What moment are you most proud of in your chronic illness journey thus far?
A: I’m so proud of my short lived career. I used to be a Recreation Therapist who worked with dementia/Alzheimer’s seniors. I was able to maintain my career for a few years despite having fractured feet, Hospitalizations, being in a clinical trial in another country, being always tired, and taking 70 pills a day. In the end I did get burnt out but it was worth it to help those seniors who don’t get the attention and empathy they deserve.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey?
A: Last year I finally had to give up my career in order to better take care of myself. I had 13 broken bones (from doing nothing), I could barely walk, stairs weren’t an option, I needed help just to shower. I’ve been fairly independent my entire life, I’ve always had a hard time asking for help because I value my independence too much. So I felt defeated when I had to give up some independence and my dream career.
8. What or who has helped you the most during the lowest days?
A: FAMILY. I would not be here today if I didn’t have such a supportive family.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: Don’t be afraid to ask for help. You’re not alone in this journey, so don’t act like you are. Always weigh out the positives and the negatives when faced with tough decision. Your health is much more important thank money/a career. And do your own advocating and research!! Seriously, writing papers and doing research on my illnesses has helped me a great amount to better understand what is necessary for my health.
10. What would you like the world to know about life as a chronic illness patient?
A: We are NOT looking for a pity party. I don’t want people to look at my story and feel bad for me; instead look at what I’ve accomplished and overcome, then be PROUD of me. I want to be an inspiration, not a charity case.
By Courtney | @miss_cystinosis