My name is Crystal Diaz and I am serving as a NextGen Fellow of The Diabetes Link this year! I was diagnosed with type 1 diabetes in 2019 at age 18 and am currently studying Global Disease Biology at UC Davis on the pre-PA route. I was so excited to discuss the topic of advocacy with Alicia Downs, who is so involved in the diabetes sector and in the healthcare field. As a young adult with hopes to enter the healthcare field, I wanted to learn about how other type 1’s navigated graduate school and their day-to-day of their careers, and Alicia was the perfect person to speak to! Advocacy is so important for increasing awareness about diabetes and for demonstrating that living with a disability is not a limitation, but a strength.
Crystal: Please tell me a bit about yourself- your story, when you were diagnosed, how did you react, what else are you involved in?
Alicia: I was misdiagnosed in college with type 2 diabetes after thinking I had chronic fatigue because I felt super tired all the time. I was put on really bad medication and was told not to eat any carbs; I was basically keto before keto was cool. The bad medication led to chronic pancreatitis, and I got really sick with really bad stomach pain and dropped a lot of weight. Five years later, I went to the doctor for the “can we get pregnant” physical. My A1C was 14 and my fasting blood sugar was 750, and I was diagnosed with type 1 diabetes. At the time, I had a really good doctor who encouraged self education. My learning and advocacy for myself led to advocating for others, especially young people. I was still figuring out what to do, so I became an RN and then eventually a CDE 4 years ago. I am now also with Integrated Diabetes Services (IDS). As a CDE, I work with JDRF, speaking with college and high school age people and connecting newly diagnosed families with resources. Advocacy through nursing, mental health, and type 1 diabetes has always been a passion for me.
Crystal: That sounds like a crazy journey! I’m glad you were empowered by and found strength in your experiences.
Crystal: What inspired you to pursue a career that involved diabetes?
Alicia: It was definitely how much I had to learn about diabetes. I had to read so many books and talk to so many people. Most people are unable to acquire and pull together all this knowledge due to other life barriers, so it’s important to me to help these individuals.
Crystal: How has your experience with diabetes influenced your time as a provider?
Alicia: I was pushed to be less judgmental. Working as a provider, you see people with different levels of compliance, diagnoses, and stages of life. Life isn’t that simple, and day-to-day routines can get in the way of taking care of oneself. I understand that, as a provider, I have to meet people where they are. Type 1 has also allowed me to make instant connections and have a deeper understanding with patients. Additionally, I had a leg-up coming in as a person with diabetes because of my experience with medical technology and my large medical knowledge foundation.
Crystal: On the topic of intersectionality, what is your experience as a woman with a disability?
Alicia: As a woman with a disability, especially endocrine, I was pushed to acknowledge my limitations. Life is just a little harder, so accommodations are needed and I’m not just throwing the D-card, or diabetes card! I am a person who is differently abled, so it requires more of me to meet the same average mark as others. Fortunately, nursing is female-dominant and they really value access. I know that getting accommodations for me now in my career gives others who don’t have the privilege to speak up the opportunity to also get accommodations.
Crystal: How have you advocated for yourself in the academic setting? Then, in your career?
Alicia: I’ll never forget the first time I took an exam after I was diagnosed. I was in nursing school at the time, and usually after exams, I’m not that stressed. But after this exam, I felt like I bombed that test. I checked my blood sugar and it was at 257. At that point, I knew I had to deal with this. I went to the disability center and put in for accommodations. Professionally, as a nurse, lives are in my hands. I had to make sure that I could take care of myself while also keeping patients safe. The staffing ratios are able to accommodate for me in the case of hypo’s where I’ll be gone for a few minutes or DKA where I could be gone for several hours. I also had to think about marking my disability during the hiring process. I thought to myself “Is checking the box that I have a disability going to prevent me from getting this job?” Legally, employers can’t consider this in the hiring decision but I still feel as though they will question if I can do this job. It is still difficult for me to check this box because I know that having diabetes isn’t going to prevent me from doing my job. Type 1 makes me really responsible and resilient because I don’t get to take a day off.
Crystal: It’s so validating hearing about your hesitancy in checking the disability box. I too have been unsure about marking that I have a disability during the hiring process because asking for accommodations can feel burdensome, but I have to remind myself that having diabetes is part of who I am and part of my story and will not inhibit my work productivity.
Crystal: What is something that college students with diabetes can take away from your story?
Alicia: First, be smart about the doctors you pick when you are at school! You’re an adult now; you should know your docs and be in the know. Be empowered to have real relationships with your clinicians. Second, get to know your disability staff on campus. It is their whole job to make sure you have everything you need to have equal footing with your peers. Sometimes, they will even think of things you haven’t thought of! Remember that asking for accommodations isn’t asking for pity or playing the D card. Part of your energy and focus HAS to be somewhere else and you’d like to bridge that gap. Third, keep diabetes listed as a strength, not a weakness! It drives us to find opportunities to serve others, and, whether in the diabetes community or not, there will always be someone you can help! Use it to empower you because it makes us, frankly, a little badass.
Crystal: How can college students start getting involved in advocacy?
Alicia: Find places of need and reach out! Reach out to the local pediatric clinic or Facebook groups, Twitter, or Beyond Type 1 or The Diabetes Link! No matter the need, be open to what they say. Don’t pigeonhole yourself, there is so much more than just your major. If you’re angry, be the squeaky wheel! Don’t be afraid to take on the state or national level, they are also people, and most of the time, they are not evil and they just don’t know. A saying I like is: we tend to overestimate what we can do in a week, but underestimate what we can do in a year. So look at those big things and be the change you want to see in the world!
Thank you to the sponsors of the NextGen Fellowship, CBDCE and Novo Nordisk!
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