Today I’m talking to Crys about her life with multiple sclerosis as a first generation Latina. Crys was diagnosed at age eleven and experienced her most severe episode at age 13 when she was paralyzed from the neck down. She recovered from this episode thanks to the devoted support of her family, especially her mother.
Nevertheless, to this day it remains a great challenge to have information about the disease, its symptoms and treatment options available in Spanish. To help children, adolescents and young adults in similar situations feel better than she did, Crys explains her life and the daily challenges of living with a chronic illness with a zest for life.
Klicken Sie auf den unteren Button, um den Podcast zu laden.
Table of Contents
Introduction – Who is Crystal Bedoya?
Crystal is a disabled creator and writer from the warm and sunny state of Arizona, USA. Despite her early MS diagnosis at age 11, she loves traveling and exploring new countries, tracking down cute coffee shops with the best matcha, reading, staying active, going to concerts, and spending time with her loved ones.
Through her social media platforms, Crystal shares relatable content for people with chronic illnesses and helps educate others about living with MS as a young first-generation Latina.
Diagnosis and status
Can you share your journey to MS diagnosis and what difficulties it involved?
At the age of 11, I started experiencing symptoms that included numbness, weakness, and tingling throughout the entire right side of my body. It first happened while walking home from middle school. I brushed it off initially, but it soon became an apparent issue when my younger sister had to help me walk home. After a misdiagnosis and months of uncertainty, I finally received my multiple sclerosis diagnosis.
How easy was it for you and your parents to understand what multiple sclerosis means and was there good information available in Spanish?
It was far from easy. Since my parents only spoke Spanish, I found it challenging to understand all the medical terminology and the healthcare system. I was still a child trying to navigate a new reality that seemed like a grown-up set of responsibilities. In terms of Spanish resources, they were limited, which made my journey difficult. Unfortunately, this remains to be a problem for many to this day.
How did you perceive the diagnosis as a child and what was it like for your family?
Although it is different for everyone, I found that my diagnosis brought on a new set of challenges to my life and my family’s. I was and remain the only person in my family with an MS diagnosis, so everything continues to be a new experience. All I cared about then was doing well in school and reading as many books as I could, so adding an MS diagnosis to my list of problems was not on my bingo card at age 11.
Were you immediately recommended disease-modifying therapies and how did you decide? And did the health insurance company cover these costs?
Yes. My doctors recommended I start a DMT as soon as I received my diagnosis. Doctors described my MS as aggressive. My first DMT was Copaxone, which is a self-injecting medication. That was a difficult reality to accept on its own. Picture an 11-year-old child having to inject herself on either her arms, stomach, or thighs every single day right after school. I still struggle to comprehend how I managed to do that.
Have you had a change in therapy and if so, for what reason?
I have been on a total of five DMTs throughout my almost 20-year journey living with MS. I typically have had to switch to a different medication solely based on it not working for me anymore.
Do you use symptomatic therapies such as medication, specialized therapists or rehabilitation programs and how readily available are they in a rural area?
I had the opportunity to do physical, speech, and occupational therapy in the past, but I had that done in larger cities. I am grateful that my community has grown and that there are programs available in my area now.
Have you adapted your lifestyle after the diagnosis?
I try my best to listen to my body. I still struggle trying to balance how much my body can take now that my disability has evolved twenty years later. I love the spoon theory and how I measure how much I can tolerate, and that’s usually my indication that I need to rest when I can.
How are you currently doing with your MS?
Living with MS comes with its daily challenges. My MS symptoms flare up and can be very unpredictable. It can also be a very stressful disease to cope with. This is why I show myself grace whenever possible.
Invisible Battles with MS
What was your rock bottom with multiple sclerosis and how did you fight your way back out?
My rock bottom was at age 13. I experienced my worst MS relapse to date, where I became paralyzed from the neck down. It was scary. I was hospitalized for three months and had to undergo many treatments and therapy to be able to walk out of that hospital with a walker. I’m beyond proud of myself for all of my hard work.
About which invisible symptoms or burdens are you talking regularly?
I experience an array of MS symptoms on a daily. The main symptoms that aren’t “visible” but challenge me the most are: brain fog, fatigue, chronic pain, migraines, vertigo, spasticity, heat sensitivity, neuropathic pain, dizziness, blurred vision, bladder issues, and so forth.
What is your main goal you want to reach with your social media account?
When I think of my social platforms, I think of my 11-year-old self. I didn’t have anyone showing me what I was supposed to be doing. How I was supposed to navigate this colossal change in my life. I didn’t have support. I didn’t have guidance. I didn’t have a community.
That’s what I want to give. Community. I am proud to say that I’m community made and I hope that by sharing such a vulnerable part of my life, it will help anyone out there living with a chronic illness.
How long have you been using a catheter and what are the benefits and problems associated with it?
I started using a catheter the summer of 2022. I experienced a terrible MS relapse in May 2020 which ultimately caused nerve damage that impacted my bladder’s ability to empty properly. That’s essentially what the catheter helps with. It keeps my bladder functioning and my kidneys working properly as well.
How difficult or easy is it for you to get involved with such aids and are you so open from the start or is it a process of adaptation and acceptance?
It was extremely different. Once again, I had to accept a new reality. That has been the common theme for my MS journey: accepting new realities. Having to learn to adapt and accept this reality continues to be a challenge for me. I do remind myself that I am more than capable of still having life and living life to the fullest even if it means that I have a catheter strapped to my leg underneath my pants.
Visible Triumphs with MS
What successes have you achieved in your life so far that you are proud of?
My proudest achievements have been being the first in my family to graduate from university and being able to travel and see the world. I love adventure and I work hard to allow myself to dream and make those dreams happen despite having to deal with constant uncertainty and challenges.
Which were the biggest hurdles in your educational and professional career and how did you overcome them?
I always thought there was something wrong with me, but realistically I was just unaware that my challenges were connected to my MS symptoms. From middle school to university, I always struggled to navigate the education system and grasp all the knowledge being thrown my way.
“It shouldn’t have to be this hard,” I would tell myself, but ultimately I was experiencing brain fog and cognitive issues caused by all the brain lesions I experienced all these years. Now, I try to be patient with myself and be strategic about how I learn and embrace new information.
What additional support would be good to help more people achieve their goals despite MS? And are there special needs in the Hispanic population in the US?
There needs to be more resources available in different languages for underserved communities living with chronic illnesses. This continues to be an issue in the healthcare system.
How do your professional and personal plans look for the coming years?
I’m grateful to have worked as a journalist for many years. Now, I love being a content creator and writer.
Wishes and goals
Have you got a big unfulfilled wish?
I want to continue to travel and see as much as I can.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
Myelin repair, so that functions that have failed or been damaged by MS can be repaired.
Quickfire Q&A Session
What is your current mantra in life?
Do it while you can!
What person would you love to have a fireside chat with and on what topic?
I would love to have a fireside chat with Pedro Pasal. I love TV and film. He’s been killing it with all the work he’s been doing, and I love his aura.
Complete the sentence: "For me, multiple sclerosis is...."
For me, multiple sclerosis is a roller coaster ride that is full of surprises!
Which website can you recommend on the topic of MS?
I love the resources provided by the National MS Society and Multiple Sclerosis Association of
America.
Farewell
Do you have any advice you would give your younger self for the timing of diagnosis?
Be kind and show yourself grace, but most importantly, I’m proud of you.
How and where can interested people find you online?
Is there anything else you would like to share with the listeners?
I’m always here for support, I love connecting with more MS friends online, so don’t be afraid to
send me a message. I’m here to chat, answer questions, and be as supportive as I can be.
Thank you so much, Crys, for sharing your journey so far and creating content for people who are in a similar situation to you in one way or another. I hope life has many beautiful things in storefor you and rewards your strength with wonderful people and experiences.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
And at many more places.
* This text contains affiliate links. This means that I get a small compensation if you buy the product recommended by me through the link. For you nothing changes in the price of the product. And it helps me to pay for the blog and to write new posts.
