Olivia's Story: Hidden Illness

Tell me about yourself. What would you like people to know about you?

I am a 26-year-old graduate student. I absolutely love to read, I am a social butterfly, and I enjoy spending my free time with friends when I am not studying. I love to travel and explore different cultures, cuisines, and landscapes, making it a mission to make friends every place I visit. 

What is your disability?

I got a traumatic brain injury when I was 16 that caused me to spiral into chronic migraines and headaches every single day since (including hemiplegic migraines and migraines with aura), POTS, chronic pain from whiplash, and post-concussion syndrome. I have since been diagnosed with some sort of hypermobility spectrum disorder, likely hypermobile EDS, and all of the struggles that come along with that, including joint pain and subluxations, scoliosis, pelvic floor dysfunction, and more. 

How does this impact your life? 

It impacts my life every single day, in big ways and small. I was always such an adventurous person, not really scared of much. Not only am I physically limited from activities I want to do, but I feel a mental hold-up as well, and a fear of more injuries. POTS has caused me to faint countless times, often in public or while alone at home. It is scary to feel disabled. Daily migraines are maybe the hardest part of this. A pain that no one can see, and most people don't believe because I am out of the house every day with a smile on my face, rather than in a dark room. I wouldn't live anymore if I let all of this hold me up in the house all the time.

What have you learned from your experiences? 

It has taught me so much about empathy. About taking risks and, weirdly, the benefit of taking occasional risks. I am the person that I am because of my experiences, and I do (for the most part) like that person. I have learned so much about pain and working during difficult times. I have become quick to learn how to accommodate to my environment, or to ask for help when needed. It has also impacted my life positively from the standpoint that I might not have ever discovered my love and desire to work in healthcare without it. 

What are some benefits you have encountered from having your disability? 

Similar to above, mostly just what I have learned from it. I genuinely see no other benefit and often have at least a quarterly crash out about "why". Why me? Why am I still hurting? I have LEARNED lessons, I have GROWN as a person, why can we not move on now? When will this get better? I recognize none of that is "benefits", I truly see very little benefit in chronic pain and dropping like a rock just from standing (how dumb). 

If someone met you for the first time, what would you like them to know about you?

I like that when people meet me (I assume) they see a happy, driven, caring person. Having an invisible disability is really difficult in its ways but sometimes I like that I can hide things, at least for a little while or in some settings. 

Any resources or advice you would like to share?

Go to your doctor prepared with questions. Don't be afraid to ask for things or get a second opinion. Get accommodated! Don't stop doing you, even if your body has some limitations.