Skip to main content

Sharing My Journey with Rare Diseases on the "I Am Not My Pain" Podcast



2024 started out with a bang for this medical zebra! The first week of January, Part One of A Woman’s Journey Living with the “Suicide Disease”, dropped on Spotify and Apple Podcasts, with Part Two dropping the following week.

Towards the end of 2023, I had recorded a podcast with the I Am Not My Pain podcast with host Melissa Adams. It was a huge thing for me! And yes, it was indeed, my first ever time being on a podcast.

Melissa was wonderful to work with. She provided such a comfortable and safe space to share my rare and emotional journey with Trigeminal Neuralgia and Occipital Neuralgia.

It helped me so much to be able to share my story. I had no idea then how it would impact me personally to hear my own story. It was incredibly moving. I even cried listening to my story. It was incredibly validating.

I am so glad I leaned into the vulnerability to share my story with my own voice. I am also thankful for the support that I had when considering the idea in the first place. My twin sister (who had previously been a guest on the podcast), along with my partner encouraged me to be a guest on the I Am Not Pain podcast. They believed that I would enjoy telling my story and would help me to do so. And they were right. I am thankful I did.

It not only was healing for me to share my story, but it helped me be able to share with others who may not have fully understood my story and health conditions.I do not want to be seen as a victim for having these conditions, nor do I want to be seen as hero for having them either, I just, I just want to be - to be seen - and I was.

I felt incredibly more seen. I also hope it helps other patients with the same rare conditions, or chronic illness as a whole, to feel seen. And I hope they know that they are not alone.

After telling my story, I truly do not feel as alone. I think it was a huge moment for myself. To truly listen to MY story, I validated myself. And I needed to do that. 

Once again, thank you Melissa for allowing me the chance to share my story, it truly meant a whole lot to this girl! 


Check out both episodes below!


S3E27: A Woman’s Journey Living with the “Suicide Disease” – Part One 


Episode: https://bit.ly/LivingwithSuicideDiseasePart1


Listen on Apple Podcasts


Listen on Spotify


S3E28: A Woman’s Journey Living with the “Suicide Disease” – Part Two


Episode: https://bit.ly/LivingwithSuicideDiseasePart2


Listen on Apple Podcasts


Listen on Spotify 



Here's a bonus for you!

Lydia Joy Launderville (my twin sister) shares about dating while having chronic illness! It’s so good! 


S2E30:Dating With Chronic Illness - Part One


S3E1: Dating With Chronic Illness - Part Two



Learn more about the I Am Not My Pain podcast and the wonderful work that Melissa is doing, here! 

Please give the I Am Not Pain podcast a follow on Facebook and Instagram! Don't forget to check out the podcast too! 


Follow The Medical Zebra on Instagram! Scan the QR code below!






Labels:

Comments

Post a Comment

Popular posts from this blog

Scars To Your Beautiful

I wished I could put into words what it feels like emotionally and mentally to be a chronic illness patient.  Some days, it’s just a routine of taking your medications, going to your doctor appointments, pain, fatigue medication side effects etc. Some days it’s just normal to not be normal. Other days, like for me today, I’m crying.  I’m crying because yet again, I’m facing another health battle. There’s a sting to this battle though. Because I have faced it before and well, thought I had won. Even my doctors called me a success story. And even used my case at a teaching conference. I held on to those words and was damn proud of myself for winning against this yet another rare disease. And one that left me with visible scars and insecurities.  When you are a chronic illness patient, sometimes you get used to being sick, but please don’t mistaken that with being okay with being sick. Maybe some individuals are. Maybe I’m just not accepting of the fact that I have chronic i...
Post a Comment
Read more

Angel

  Many people don’t understand the depth of virtual friendships.  Virtual friendships are real friendships. Just because they come about from connecting with someone online doesn’t make them less of a friendship.     Those of us with rare chronic illness, our virtual friendships are formed from the chronic illness world itself. You connect with those who already understand what you are going through. These friendships are special. The chance of coming across someone in person that has the same rare condition, is rare like the condition itself.  Because of that, these virtual friendships are that much more meaningful and impactful. They touch your heart and life.   Angel.  When I think about her I always think of three things. Butterflies, makeup and how much I thought her name fit her.   We met through a support group for Trigeminal Neuralgia. The funny thing is she messaged my identical twin asking for advice and looking for someone who wou...
Post a Comment
Read more

Facial Pain Awareness Month

October is Facial Pain Awareness Month! 💙 I have had facial pain for thirteen years now. Developing it at age seventeen (though I often wonder if I have been experiencing symptoms as young as thirteen), was a huge impact on me. It has not only caused chronic, at times unbearable pain, it has also affected me emotionally and mentally. Facial pain may be in the face and head but the whole body is effected. Facial pain awareness is needed not only for cures, but for others to understand the struggle that I and so many other rare facial pain patients go through on a daily basis. Having facial pain requires a strength that many of us do not realize we have until we start fighting this ongoing battle. It's a fight that we are not alone in.  I'm thankful for the facial pain community, you all have been a light to me on days when the pain felt like it would drown me. Finding everyone a few years ago was the game changer I needed. I love and appreciate each of you.  We are warriors....
Post a Comment
Read more