What I learned is that if you are trying your best then that is usually good enough. The problem isn’t you per se, but the other people. I was trying so hard that I realized I was trying way harder than other people and not getting good results. I was always supportive of people, so I would go to volleyball games to cheer them on or stay after school to help. I was always available if somebody needed help with their homework, someone to talk to, or any help they needed. When I needed their help, I experienced a lot of ghosting, and not being invited was difficult.
Read morePOP! for Medical PTSD →
Many chronically ill patients feel as if they should be grateful for their providers at all times, even after medical errors. Anger can tell us when a situation is unfair. It can motivate us to make positive changes to improve the healthcare system. This can be accomplished by self-advocating in-clinic appointments, coping with a new diagnosis, getting honest with providers, or navigating relationships, all while dealing with medical trauma. I hope you can join us at our next discussion group or give us a follow on Instagram: @pop_medicalptsd!
Read moreThe Power of Reframing
I like order, structure, predictability, and while I can’t always have all of those things with my illness, there’s a certain amount that I do expect during the workday. But that day, suddenly, it was the opposite of all of those things, now I had a choice: sit here and complain about it or implement a technique I’d been learning in a professional development course. I already knew the first one wasn’t going to work, so I might as well try the second. What I didn’t expect was how amazingly effective it was going to be.
Read moreMy Onion Journey
Yet, while I was in college, I felt a whole new level of emotions. When I was a junior, I felt a mixture of sadness, then anger, and then resentment. I was worried about my next step in life. I was afraid to ask my mom to discuss my family planning future with my geneticist or endocrinologist. “What if I can’t have kids?” I’d often wonder.
Read moreDancing with a Urea Cycle Disorder
I also enjoy dancing and miss the days when I was able to dance every week. I dance any time I get a chance to do so. Sometimes I will take a class with my friends, or we go out dancing somewhere. I have done all these things while learning how to live, love, and manage to live with a urea cycle disorder. As someone who has a rare disease, I want to share my story with others to help others going through similar struggles and strides. Even though we might have to climb these rare-disease-mountains that does not mean we have to climb them alone.
Read moreMy Truth
The sad thing is that I was going so far out of my way to accommodate others, that I was putting my own mental and physical health in jeopardy. This was when I began to realize something. The only person who has any say in the validity of my life experiences is me. People may be “uncomfortable” hearing about what I’m going through, but I guarantee they’d be far more “uncomfortable” actually living through it. I also realized that as an individual suffering from a rare condition, I have a unique opportunity to change the narrative and stigma surrounding this community. But the only way to do that is to stand with courage in your convictions and speak your truth. If people, in turn, choose to judge you… guess what? They are not “your” people.
Read moreThe Different Versions of Healthy
“Healthy” is not a one-size-fits-all. It has taken me years to accept that when I go into crisis I will have to do certain things that society considers “unhealthy” in order to stop long-term damage to my muscles. As the patient, it’s important to remember your worth, and trust in yourself and your care team to know what is best for you—not your co-worker who swears by intermittent fasting. I’m grateful that I have stopped trying to blend in and hide my quirks and instead welcome the questions from others, even if their approach could use a little work because that is best for me.
Read moreEverybody Lies
We all deserve this magical life we have been given, regardless of our differences. Everybody lies, to others and to ourselves, but we can choose not to, and instead let the truth tell us who we are.
Read moreSelf-Advocacy, Communication, & Attaining Individual Freedom →
Self-advocacy for me looks a lot like communication between my healthcare team, insurances, pharmacists and my social system. My social system includes people like patient assistance managers, but it also includes my parents. Sometimes it can include social workers who are employed by hospitals or insurance companies. Making sure we are all on the same page and that my medical treatment is available and affordable, on top of managing daily life is a big part of my own autonomy and individual freedom as a disabled female.
Read moreOn Being At Peace Not An Inspiration Factory
“Every day was a balance of energy between the things I couldn't cope with and the life I had planned for myself. Yet the people around me still hounded me, treating me as an inspiration factory. To them, I was just another sob story, a conglomeration of nature's cruelest tricks, so if they could get my secret to staying happy, then maybe they too could find joy in their more privileged circumstances. My question to them now would be to ask why they felt the need to use my pain to uplift themselves? The tough things I went through are not an inspiration for me; they are merely pieces of me that I own up to and love. It took me a while, but now I’m proud to be weak.” — Ken
Ken is a rare disease warrior friend of mine and that was an excerpt from the blog post they wrote recently for Our Odyssey’s blog. The story they shared has a message I believe isn’t discussed enough…
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