Interview with Jordan Ray- Chiari, Migraines, College, & Running a Business: A Chronic Illness Podcast
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What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
I was a high school softball athlete, with opportunities to play college ball. Until I was diagnosed with chiari malformation.
What would you do if you were not dealing with your invisible illness? *
I would be a student athlete playing college softball
What would you like people to know about your daily life? *
Struggle daily with horrible migraines, and chiari. this is what caused me to create this company and our products to help track pain and symptoms accurately.
What would make living and moving in the world easier for you? *
less migraines and pain, daily migraines make living harder.
What kind of support do you get from family or friends? *
when I got diagnosed I had a huge support system from family and friends, they did not understand what I was diagnosed with because only a few people are aware of Chiari. But they still were there for me in any way they could.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Yes, when I first got diagnosed. I had a "friend" tell me her mom is a nurse and Chiari Malformation does not exist and I am faking my illness. I think having an invisible illness makes explaining your illness a little more difficult
How has your invisible illness affected your relationships? *
people do not like sick people. it is always an inconvenience to them. If it does not benefit them they do not care. My friends and family still continue to be a support, so my relationships have not truly been affected. Only when they ask to hang out or go out somewhere and I cant due to 10/10 pain
Is there anything you are afraid to tell people in your life? *
no, not really. I am always open to family and friends. I am trying to spread awareness about this, my family and I went through months of different remedies.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
yes, some professionals will not give you the time of the day. They do not listen to your exact symptoms and how you have been feeling which affects how quickly you can be treated.
What is your best coping mechanism? *
Coaching the sport I love, since I no longer can play this game. I cope with being able to coach and teach my players on how to excel in this sport and get them to the collegiate level. I also volunteer my time to coach a baseball event for kids with mental disorders. I like writing things down, from my feelings, to daily activities. it is very therapeutic and also I do not have to stress to remember everything. Since I struggle with brain fog and memory loss. I also love the gym but since my symptoms have been horrible, I have been limited to my gym activities.
What are you the most concerned about and the most hopeful for in the future? *
I am hoping to get relief from these debilitating symptom and provide life changing medical logs to everyone battling a illness like I am.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
Spreading awareness about Chiari Malformation and how this illness has changed my life & my families. My mom being diagnosed with breast cancer when I was 16, how I had to mature faster than my friends. Using softball as my escape. My black out causing us to figure out I had Chiari, I could of blacked out while driving.
What is the hardest and/or best lesson your condition has taught you?
" it's not what happens to you, but how you react to it that matters" I love this quote. I have taken my personal illness and designed a management tool for people with chronic illnesses.
What is the best purchase under $100 that helped your life
A stem machine, for my back and my neck. Also my medical log, it had been a game changer for me during my illness.
May We Add You To Our Newsletter? *
Any questions you think we should add to this list?
I am trying to spread awareness about chiari, the treatments, money spent, time wasted.