Morgan's Story

Morgan stands embraced, between her sister and boyfriend.

  

  My name is Morgan Jones. Here is my story: I used to live in Illinois, a small town. I had everything a girl could want - two wonderful sisters, two wonderful parents, and a smile that lights up the world. All I could do was smile; I had a crazy imagination, and I wanted to be a model and Disney actress because I felt pretty when I smiled. I wasn’t afraid of anything when I was a child, except for bad storms and sleeping alone in the dark. I even had stage fright. When I was little, I would sleep with my mom because I was so scared. 

 My mom got me into music and the idea of being famous. She taught me how to dance and heard me singing every day in the bedroom. I wanted to help my parents because we were struggling at the time, and I wanted to get them a big house. 

  When I was around 9, I started losing my smile. My teeth ended up getting bad because I wouldn’t brush them due to the pain I was in. My mom took me to so many dentists, but none of them really helped. I remember one time I was told I couldn’t have chocolate milk. No dentist really knew what they were doing, and it wasn't my parents' fault; they didn't want to see me in pain, so they didn't make me brush my teeth, which caused tooth decay. 

  I remember how hard it was for my mom because the school kept calling about how I was getting bullied for my teeth. I would sit alone at the table, get ditched at football games and carvels, laughed at in school hallways, told I paid my friends, called a toothless freak, and even bullied about my hair at one point. I was bullied to the point where I lost my self-esteem. I still remember those words and the places where I was bullied. I wanted so badly to fit in that I made up a story about being a mermaid, which only caused more bullying. 

  Not only did I get bullied, but I also lost my mom at the age of ten. No girl should live without their mom; I would do anything to have my mom here. I know God wanted a pretty flower, so he picked my mom. 

  I kept getting infections in my teeth, fevers, headaches - you name it, I got it. My dad found a dentist who was willing to do surgery on me. He said I had to get all my teeth cut out. Remember I said I wasn’t afraid of anything? I wasn’t afraid of getting my teeth cut out; I knew they were going to put me asleep. I remember my mom told me to tell the surgeon my favorite TV show if I ever had surgery, and I would dream about it. I went three years without teeth, just music and me. I had my sister, my cousin, and her friends, so I had support. I got my teeth my freshman year, but the bullying got worse. There was a homecoming prank; I found it funny now, but it hurt me then. 

  My dad met a girl in an online young widow group. It made me happy knowing he was happy. It made me happy knowing I had a new best friend who constantly made me laugh and gave me a backbone. 

  For a long time, I wanted to start over. I started at Moorestown High School, and I was shy at first. I met two girls, and we became best friends. Carolyn, Mel and I wouldn’t trade those girls for the world. They said you only get two best friends. They became like family to me. We hung out all the time, I could call them anytime, they were the girls I could count on. 

  Around my senior year, I found out I had trigeminal neuralgia. This whole time, it was a disease that I didn’t even know I had. I went through every medicine, and I still get pain to this day, but I always come back from the spasms. I am an overcomer; I can overcome any obstacles that come my way. I am one of those girls who doesn’t give up. My boyfriend always encourages me that I am a fighter, and I have to stay positive. 

  I have great people here in Jersey who tell me how much I inspire them, how much they look up to me. I am not ashamed of my story because I know it’s going to help a lot of people. One day, I am going to have someone tell me that my story helped them. I hope I can change the world. 

  Please be kind, guys; there are so many people who need it. 

  Just because you have an illness doesn’t mean there’s no greatness in you; it doesn’t mean you are not a fighter because you are a fighter. Don’t give up; share your story and help many ❤️.

Check out Morgan's Etsy Store where she raises money to donate to facial pain awareness! 

Want to share your RARE story on my blog? 

Send me an email at lauriegirl.medicalzebra@gmail.com

Let's show the world our zebra stripes! 

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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! 

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Today is International Occipital Neuralgia Awareness Day! 

What is Occipital Neuralgia (ON)? 

“Occipital neuralgia (ON) is a condition in which the occipital nerves, the nerves that run through the scalp, are injured or inflamed. This causes headaches that feel like severe piercing, throbbing or shock-like pain in the upper neck, back of the head or behind the ears.” - The Facial Pain Association. 

ON is rare, some numbers suggest 3 people per 100,000 develop it. 

There is no cure. 

A bit of my story with ON: I was diagnosed last year with Occipital Neuralgia (ON), though my symptoms first showed up in 2020. ON is very painful. My symptoms are electric like shocks and stabs to the back of my neck, head and behind my ears and tip of my ears. I also at times have a continuous burning ache on the back of my head and ears. My neck and back of my head feel like it is in a vice grip. I also have a crawling sensation. The pain level from ON can be very chronic at times and debilitating. My pain is thankfully not constant however. It flares and the flares can last anywhere for a few days, to weeks, even months. In a flare, the pain tends to be constant. My triggers, can be from anything such as touching my neck, the back of my head, and ears. Brushing my hair, pulling it into a pony tail, or sleeping on a pillow, wearing a hat or hoodie can also be incredibly painful.

Today is International Occipital Neuralgia Awareness Day, but for those who have this condition or loves someone with this condition, ON is every day. There is no cure. That’s why awareness is so important on today and every day. 

For more info on ON check out The Facial Pain Association (FPA) and the Occipital Neuralgia Foundation

FPA: facepain.org

Occipital Neuralgia Foundation: onfsupport.org

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I May Be Rare, But I Am Not Invisible

 

Today is International Trigeminal Neuralgia Awareness Day!

I have had TN since I was seventeen (2010) but did not receive my official diagnosis until I was almost twenty-six (2019).

Because I understand such a chronic pain condition known amongst medical professionals as “the worst pain known to mankind”, and a condition without a cure, I know how important it is that we spread awareness for TN.

I also understand how the lack of having a diagnosis for so long impacts someone, especially as a young patient. That is why I bring awareness, volunteer and continue to share my story. Today may be TN awareness day, but for those of us with TN, every day we are aware of it.

Today is for the warriors who are fighting TN, the Survivors who have experienced TN and the Angels who have passed due to Trigeminal Neuralgia being known as the suicide disease. That’s why a cure is needed.

So what exactly is Trigeminal Neuralgia (TN)?

Here is what TN is in a nutshell from an article I wrote a few years back called We Need a Cure for Trigeminal Neuralgia

“Trigeminal neuralgia, also known as tic douloureux is a neurological pain condition affecting the trigeminal nerve, specifically the fifth cranial nerve. There are two trigeminal nerves, and each nerve is connected to the brain stem. Each are responsible for the function and the sending of sensations to each side of the face. When working correctly, most people don’t think about, let alone know, what the trigeminal nerve is. And likely, most have never heard of the tongue-twisting named disease called trigeminal neuralgia (TN).

What TN does, is it tells the brain that everything hurts. Talking, eating, brushing your teeth, the wind, water, a gentle touch: everything that is an innocent and normal function or sensation on the face becomes a threat. The reaction is attacks (episodes) of sudden, sporadic and shooting chronic pain. Sometimes it feels like you are being electrocuted. Other times, it is a chronic, burning pain that feels like someone is putting a blowtorch to your face. Then, there are moments it feels like someone is punching you over and over again with an iron fist. Or you’re being stabbed with a dagger. There truly is no one way of explaining what it feels like… Except for the worst pain you could experience, times a hundred.

Trigeminal neuralgia is rare and that is another reason why not many people know what it is. The only ones who tend to know what TN is, are a) those who have this horrendous disease, b) those who love someone with it, and c) some medical professionals.

I’m one of those who has this painful condition. Like I said, trigeminal neuralgia is rare. For those under the age of 40, it’s even more rare. For some of us, it’s extra rare. My TN showed up at age 17. I can agree with the medical professionals: it is one of the most, if not the most, painful conditions known to mankind. I promise they were not kidding. I definitely wouldn’t recommend TN. I don’t have to know what it feels like to be struck by lightning; I have trigeminal neuralgia.”

Today is Trigeminal Neuralgia Awareness Day, but for me it is every day. I may be rare but I am not invisible.

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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. 

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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 illness and I will always have some form of chronic illness. Maybe this is more about acceptance than it is about anything. Or maybe it’s just grief. 

In reality we cannot control things. And often we do not get to choose what life will give us. I understand that lesson. Truly I do, but that does not mean that I do not grieve sometimes what life decides to give me. I do not get to choose what battles that I will face or reface. That stings a bit. It really does. When you hear the words remission, you know that means that you understand logically a condition/disease can and might reactivate again. It’s just the way the human body is. You logically understand that, but sometimes emotionally you don’t fully grasp it. That’s me right now. I accepted my scars. And I struggle with the insecurities of those scars, usually daily. And I’m struggling with the idea of possibly having more scars. 

Some people say the scars we have make us beautiful because it speaks to our inner strength and resilience. Maybe that is true. And when I look at it fully, I do deep down believe that. Do I see them as beautiful, truthfully I don’t. Am I a beautiful human with scars, yes. 

Having an autoimmune condition is hard. It feels like your body hates you, or at least sees you as a threat, so it attacks itself. It’s hard because you wished so badly that your body would just listen to you, when you say, “hey body, it’s okay, we don’t need to hurt ourselves. We are not really a threat.” But no matter how hard you try to tell it that, it never listens to the pep talk. 

When I was nineteen, I realized what it was like to have an autoimmune disease. Lichen Planopilaris (LPP). It’s a form of alopecia that attacks the scalp and it is very painful. It was extremely hard to go through, and it caused extreme anxiety and depression for me. That was all worsened due to the fact I could see and feel the difference of what was happening to my body. Doctors don’t fully know why it happens, but it is believed that possible stress can cause it. But for whatever reason, the body attacks your hair follicles, and not only that it decides to leave you with painful and ugly scars. It did this to me. 

I remember when I went to a PCP to get a physical, I had been so nervous and embarrassed to tell the receptionist on the phone what was wrong so I scheduled a full physical. I remember when the doctor came in and she said with a chuckle, “So I hear you’re losing your hair.” I cannot describe how incredibly much that hurt and how ashamed I felt. Not to mention afraid. I literally withdrew into myself. Yes, medical trauma is real. Thankfully the dermatologist they sent me to was kind, gentle and understanding. I still look up to her to this day. 

I do not know why we as humans are ashamed about health conditions that happen to us. We are not at fault for what our bodies decide to do. I wished I could grasp onto that more for myself. To say firmly and actually believe it when I say, “Laura this is not your fault. This is not your fault.”

I often feel like an oddity. The sickie. The rare person that the medical world doesn’t always know what to make of. I often joke about it. I think I do that because when I joke about it I feel less afraid. But don’t be mistaken, I am afraid. It is a very heavy burden to be a person who comes down with rare and unknown conditions. It’s a heavy burden that I have been carrying for a while. And it is overwhelming some days. Very overwhelming. 

Before I sat down at my laptop to write this, I was in tears. And I cried through more than half of this, to be honest. I’m feeling a bit better, cause like my therapist often asks me when I am overwhelmed, did you write it out? This time I did. And I’m glad I did. But I’m also feeling better because I don’t feel as much of the need to hide my scars. I have LPP. It’s not my fault. It never was and it never will be. I am insecure because of it. It is very vulnerable to not feel or appear as what is "normal" for many people. It hurts your self-esteem. And anyone can feel that for whatever reason. 

While feeling overwhelmed about this condition reactivating, I do what I often do, I look for others who have it or a similar condition. Because I know that they too understand it. I googled “famous people who have LPP and alopecia” and many famous people popped up. Powerful and badass people. Many who are women. And one stood out to me and actually sang a powerful song. The singer who sang “Scars To Your Beautiful”, Alessia Cara, struggled with alopecia throughout her childhood and teen years. I related so much to her story. And felt incredibly seen and heard. And less alone. 

Health conditions often give us insecurities and leave us with feeling all alone, ashamed and embarrassed. Ones that leave the scars behind are also a reminder to us of what we have faced. Sometimes I think that is the hardest part. 

The perception of how others may view us is also hard. Though I have found those who are gentle and kind will see you for who you are. They view what we view as our imperfections, they see as just being human. I don’t think I will look at my scars as beautiful, but I can look at the person I am that has these scars as beautiful. Cause I am. And I know that.

"You should know you're beautiful just the way you are

And you don't have to change a thing

The world could change its heart

No scars to your beautiful

We're stars and we're beautiful"

- Alessia Cara

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They Told Me I Would Never Be Happy, They Lied.

  I recently attended a workshop that the nonprofit that I volunteered hosted. It was a writing workshop and I had never done one before. So I didn’t know what to expect. I ended up enjoying it immensely.

  There is something about hearing the words of other survivors that have gone through the same or similar things as you have. It’s incredible listening to their words as they read them aloud. It was emotional and empowering.

  In the workshop it was suggested that we write something that came to mind by choosing one of the following prompts. Prompt One was “I remember when and I always imagined” and Prompt Two was “I don’t remember if, but I always imagined”, I went with the first one.

  Now although I write sometimes, hence this blog, I don’t fully consider myself a writer. I have my moments where I have words that I want to share, so I do. I’m a sharer of words. Okay so maybe I am a bit of a writer after all.

  After we were encouraged to write whatever came to mind, we were also asked if we wanted to read aloud our words. I’m a nervous, shy person, so although I often and am able to muster up the courage to be brave and speak a lot of times, this wasn’t one of the times. But I made up mind that I wanted to share my words regardless. And so here it goes.

  “I remember when I first left the cult. There was so much fear, confusion and really just the unknown laid out before me. I grew up in a world where there was nothing to be unknown, where everything was said to have an answer from the IFB (Independent Fundamental Baptists) to suddenly be thrust into a world that had no answers. It was an odd and scary feeling. The world I grew up in was so sure of itself. And hence I felt sure of myself. Like I said, there was answers for every question and those came from our leader, the Man of God, the pastor. Any question could be answered by him because God spoke through him to speak to us. But without him I had no answers to my questions. I always imagined, what it would be like to not have left the cult. What would my life end up looking like? Who would I end up being? And with even all those questions I have, I have an answer for them. I would have been the same as I was within the cult, having all the answers from the IFB God, but having no real answers for life. Because in a world where they said they had all the answers they only had IFB answers. A world that was said to have all the answers really had none. I was always in a world of the unknown I just didn’t know it at the time. 

  When I left the cult I faced the unknown on my own. At least I had the choice to decide what I wanted to make out of that unknown. It was my unknown. The cult couldn’t have it. My unknown equaled my future. And although there was many things I didn’t know, I knew that."

  I still know that. I wished I could find the words to express the incredible feeling of knowing that I found freedom. I couldn’t know then how my life would be now. All the wonderful things I have experienced, the wonderful people that I have met and have become a part of my life. Something that never would have happened if I had stayed within the walls that I was born into. That is incredible to me. It also brings tears, because I lived within a world where I never chose to be - a world that was said to be safe, but only hurt me - a world that stole so much from me, things that I will never ever get back - a world that told me when I left that I would never ever be happy without them on the outside. It brings tears because I now know the real meaning of happiness and it never would have been found within their cult. 

They told me my future would never be happy. They lied.

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It's Not Fair

  One of the things I feel that has helped me with my own battle with facial pain, is helping others. I volunteer with a nonprofit that supports patients with facial pain. I work specifically with supporting young patients under the age of forty. It's very rewarding to help others who are in the age range of myself when I first developed facial pain. 

  While recently doing my volunteer work, I was talking to a newly diagnosed patient. We were talking about the acceptance of having something that can’t be cured, having facial pain and chronic illness as a whole and how it is not fair. Especially for those of us that have already been through a lot in life. I agreed. 

  Some people may criticize someone for feeling that something is not fair. I do not think it should be criticized. I feel that it is one of the most human experiences, to feel that something like a disease, or health struggle is not fair. You know why, because it is not fair. Especially if you have been through a hell of a lot already. 

  I shared I understood the feeling well. I didn’t dive into my own reasons where I have also felt the same way, and had the very same thought. This conversation wasn’t about me, it was about holding space for this human who was wrestling with the tremendous fact that they have come down with a rare and incredibly painful condition. A condition that has changed life as they know it. 

  The young patient asked me how did I overcome this thought, of "it's not fair". I made it clear that I didn’t overcome it, but it did get easier, especially with time, I shared I found purpose in my pain. And then an incredibly tough questioned was prompted to me, what was my purpose? I choked up inside a bit as I shared that I had gone undiagnosed for nearly ten years. I was incredibly alone during that time. And very afraid because I did not know what was wrong with my face. Once I found answers and found others who understood, that also had my rare condition of Trigeminal Neuralgia, I found that I was not alone. Knowing that was a huge game changer for me. My purpose is to give back by volunteering and giving back that message that helped me beyond words, that they too, are not alone. And they can get through this.

  Hearing that question of what was my purpose in having such a terrible condition(s), really caused introspection for me the following day.

  I have been through a hell of a lot. A lot of those of us who come down with a chronic illness have already rode the rough seas of life. The last thing we need is a condition that impacts our life the way rare facial pain does. For me, for goodness sake I was born and raised inside a cult. The trauma that I have experienced is tremendous. Leaving at twenty-one was very traumatic in itself. Was it not enough to have survived a cult? Why did I too have to go through something as painful as TN? And why did I have to develop my rare facial pain within the cult?

  I was bullied within the cult due to having Trigeminal Neuralgia (although undiagnosed at the time), I was told I was lying, that I couldn’t possibly be in that much pain. That I was being dramatic. I have hurtful memories from the onset of my pain. 

  Trauma of developing my condition is three fold for me. The fact of developing such a painful condition, being not believed, and having the deep rooted belief planted by the cult that I should just toughen up and not have medical help. 

  The doubts that were placed from other’s words had a huge impact of me not seeking help sooner. And fear. So much fear. 

  The experiences of being forced to sing through episodes of facial pain, to the point that I had sweated through my clothes is still raw on some days. Or the memory of being told I looked like a monster as my face would contort through an episode. I was told to stop making those faces as I was embarrassing myself and embarrassing those around me. That one hurts. 

  These memories sting but they also anger me. Anger me for that little seventeen girl that was so scared and tried her best to hide the attacks. I should never had to feel that way. I should have never had to hide my pain. I should’ve been able to go through my attacks with no judgment. Yes, I feel anger on behalf of myself.

  Thankfully, leaving the cult, I only have loving and supporting people around me now. No bullies. Only believers in me. Believers that my pain, was and is indeed real.

  So yes, I do believe that it is not fair for anyone to come down with facial pain. Especially those who have already been through so much already. It’s not fair.  

  It's. Not. Fair.

  I want to hold space for patients who are feeling this right now. I also want to hold space for myself, to stand in my truth, that it was not fair that I also developed Trigeminal Neuralgia.

  Finding purpose in the pain…I am still finding purpose in my facial pain. Some days I feel it to my core, that there is indeed a purpose. Other days, I just feel like bad shit happens. And that bad shit, was me developing TN. All of those emotions are valid. And that is me being real.

 What I do know is my purpose in life is to live. To live beautifully. To live beautifully in spite of any type of pain. And I'm doing just that. 

 

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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 was 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 would understand. She had accidently messaged the wrong twin. My twin explained she wasn’t the one with TN and sent her my way.

  And so it began.

  Our friendship.

  Angel was kind.

  She was also funny, blunt and would crack me up the more I got to know her.

  She had a personality that was beautiful and her smile was contagious.

  She came along in a time when I was struggling deeply with my health and was falling into a deep depression.

  My pain levels were through the roofs and Covid was taking over the world. Life was already heading fast to virtual living. And that wasn’t much different than how we were already living due to Trigeminal Neuralgia. We were the same age. Which was nice. We both had anxiety. And PTSD. And we shared some of our personal stories and supported each other.

  We were friends outside of TN. And at the time, I had been without friend for a long time. We talked about everything.

  She was a person of faith and her faith was important to her. I was recovering from what my “faith” had done to me. She wanted to help me heal from that. Our main thing we bonded over was, music. Gosh she loved music. All of it but especially country music. Our favorite song though, was a contemporary Christian song. Tell Your Heart to Beat Again. It had been a song that had pulled me through so many tough days, after leaving the cult that I had survived. It had been a song that reminded her that she could face anything, even Trigeminal Neuralgia. It had been a song that had meant a lot to me before meeting her. Now when I hear it, I think of her.

  Makeup. Angel believed anything could be solved by putting your makeup on. She said concentrating on feeling pretty helped a lot with TN and helped with depression. I was afraid of putting on makeup because of the pain, she believed in not letting TN steal her makeup. I didn’t actually start wearing makeup again until this year. When I first put it on, I thought, Angel would be so proud and happy about that. And she would have said, “Finally girly!”

  Angel was one of the people that believed in me. She would tell me, beg me to consider volunteering to help others with TN, but she was also one to remind me to not let TN be my whole identity. She would remind me that I was a whole person regardless of TN and to celebrate life by living it.

 I remember one day we were planning on how to meet up with each other. She lived in New Mexico and I in Virginia. The plan was to meet each other when she was coming back from a trip to Washington DC. That trip didn’t happen due to Covid. I wish it had.

 She had wanted a pen pal and I had missed having one for a while. And so our few letters began. A letter here and there. Christmas cards. She would text me excitedly wondering when the next letter/card would be getting to her. And I would tell her it was on the way but didn’t know when. She would say it needed to hurry up. I would laugh. She cracked me up.

 She loved butterflies. Now when I see them, I think of her.

 She was a beautiful soul. She was the epitome of her name. Angel.

 Three days before she passed, she texted me.

She had told me she had something to tell me, I had been overwhelmed that week and was burnt out and so that text went unanswered with a plan to answer when I felt up to it. I never got a chance to reply. I will never know what that something was that she wanted to tell me. That is not a good feeling.

  Friendships, sometimes are not forever. Sometimes they are for seasons. But while you are in that season, they replenish your soul, they bring strength to you, remind you of your light and remind you to not ever quit. They can challenge you. To better yourself. Friendships can help you get to know yourself and grow. Angel’s friendship did all of that and more for me.

  May makes a year since she has been gone. And yet sometimes I still forget that she is gone. I thought about texting her the other day then realized that she wouldn't answer me.

  Many times I focus on all the struggles and terrible things I have experienced due to Trigeminal Neuralgia. But TN brought beautiful things with it too. It brought friendships to me. It brought an Angel to me.

When You Don't Feel Seen and Heard By Your Doctor: Part Two

  Because I have chronic illness and rare conditions, I have to work with doctors a lot. I have had good experiences with doctors but I have also had some really bad experiences with doctors and the medical world as a whole. I often don’t feel heard or seen as a patient and as a person. 

  It is incredibly hard for me to learn to trust doctors. And even more so, to not lose faith in them, once I have learned to trust them. So when I find one that I feel seen, heard and validated by, I consider them rare. Almost as rare as my conditions. I value them. They are like the tiniest of lights in an often overwhelming darkness that is chronic illness.

  But here’s the thing, those doctors, that I do trust, and have a good relationship with, have also gotten it wrong.

  I feel sometimes that the look I receive from them is “Gosh how can this girl have so many mysterious symptoms? It’s probably just in her head”. Nothing that I haven’t quietly thought to myself, if I am being fully honest here.

  When you have chronic illness, it’s not uncommon to think that maybe you are just too sensitive, that you are losing your mind, that maybe somehow you are just confused. That you are misreading how your body is feeling. And truthfully, I have even lost the confidence to read it right a time or two.

  With one particular condition, I was having to communicate with my doctor every few days. Sometimes making a trip into the office weekly. I knew something was wrong and diagnosed the problem and told my doctor. I felt and could hear the hesitancy through the messages and then in person on her end. She took a test and I waited for the result, while the condition got worse. I felt down deep that I knew and had the right diagnosis. My doctor was not at all as certain as I was. 

  Sure enough, the test came back with what I told my doctor had been the problem. And I cried. I had started to feel like my doctor thought I was making things up or even losing my mind. I had even taken on those emotions. I had been so overwhelmed by my body, that I had started to think maybe it was true. 

  With that diagnosis, there was a feeling of validation, and a reassurance that I could indeed trust my body, if only I would keep listening and advocating for it. My doctor also I believe with that test, learned to trust me too. And respected me. 

  When I went back into the office to see my doctor that I trust for a follow up, I decided to share and tell her how I had felt. I let her know that I had begun to feel like I couldn’t trust myself to read my own body anymore, that I started to worry that her and her team had felt the same way, and had labeled me as just “emotional”. She said she understood and reminded me that I had been going through a lot, and that I could trust her, that I was not alone in this. I felt seen, heard and validated.

  I came to find my doctor had been overwhelmed with trying to get the right diagnoses for my mystery conditions. She hadn’t wanted to let me down and put me through anything else more.    

  I try and remember that sometimes there are many doctors who are trying their best with us rare patients. Many truly do care about us. And they want to help cure and fix our problems. Sometimes they miss that mark though and we are left feeling even more alone in our rarity.

  What I have found though is pause, and try to communicate to the human wearing that white coat rather than just the doctor.

  A patient and a doctor are to be a team. I think often times, patients are left feeling like doctors are the authority. Unfortunately, some doctors are the authority over a patient and are more about power rather than about the best interest of their patient. But when you are a team with the people (doctors) who are there to help you, you will feel seen, heard, and validated. And if ever you don’t feel that you are, communicate with them. Communicate to the person wearing the white coat. They might just listen. 

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When You Don't Feel Seen and Heard By Your Doctor: Part One

  In the world of medicine, healthcare professionals are taught this sometimes logical thinking when it comes to diagnosing a patient, ‘when you hear hoof beats, think of horses, not zebras.' What this simply means is when a patient shows up with symptoms, even if those symptoms are more unique in nature, they most likely are not going to end up being a zebra and being diagnosed with a rare condition. However, what happens sometimes, some of those patients do end up being a zebra. Most often doctors focus solely on their patient "having" to be a horse and dismiss all their zebra stripes. This can lead to more misery, prolonged and worsening of symptoms. Emotional and mental agony can also occur, which is also known as medical gaslighting.

  I understand what this feels like. I understand every part of this. I was never the damn horse. I was always the zebra.

  For many years, I felt this way due to having chronic illness and facial pain. One of the many challenges for those of us with chronic illness and specifically rare conditions, like facial pain, is not being seen and heard by the medical world. 

  It can feel very overwhelming when those who are trained, and are supposed to be the ones to help you, leave you feeling dismissed and not being taken care of. The physical side of things in itself is scary, but so is the complications that affect our emotional and mental health. It adds more worry, anxiety, and sometimes even causes a worsening of physical symptoms.

  I am in tuned to my body. I always have been. I know when things just don’t feel quite right. I can sense the feeling of worsening of symptoms, an approaching flare, and patterns. It’s my body. I have learned (and still am learning) to listen to what it is trying to tell me.
  

  I have learned a lot about the medical world. Specifically my conditions. In many instances, I know more about my own health conditions than a lot of doctors. It’s nothing new, to receive a puzzled look from a medical professional when saying the name of a medication and one of my conditions. Most days, I am understanding and compassionate that maybe they are not familiar with my condition, because it is, in fact, rare. So I take the opportunity to spread awareness and educate others about my conditions in hope that the medical worker will remember and be able to help the next patient that shows up with my condition. 

  But, it can also on some days, leave me feeling disheartened and even more of the odd one out when I sit schooling a medical professional about something like Trigeminal Neuralgia or Occipital Neuralgia. 

  But what about when you end up feeling not seen, heard and validated and even shrugged off or dismissed by your own doctors that treat your rare condition? When you’re left feeling that you have been left in the proverbial dust; left to treat your own condition without the resources that your doctor has? For me it’s hard to grasp the word and words to describe this feeling. Sometimes, it shows up in the feeling of disbelief, feeling dismissed, anger, sadness, and a stinging deep to my core, and ultimately feelings of hopelessness.

  Let me paint a picture of some scenarios that I have experienced.

  I have Trigeminal Neuralgia. It’s rare. I am aware of that. I know it’s extra rare due to my age of developing it at seventeen. My first neurologist almost completely dismissed this diagnosis due to my age alone, but ultimately sent for confirmation, via an MRI and a radiologist that he trusted. It confirmed Trigeminal Neuralgia on scan (I understand that is not always the case for everyone and they still have the condition). Even with that information, my neurologist at the time was reluctant about giving me the diagnosis, once again only due to my age. But because there had been (as he told me) an in depth argument by the radiologist that he knew and trusted he had no choice but to give me the diagnosis, though reluctantly. To this day, I am thankful to that radiologist I never met who advocated for me.

  My neurologist did treat me as if I had TN (which I did and still do). It still left me feeling stung though. I knew down deep that this had been the accurate diagnosis even before receiving it. Not being fully believed by your doctor, is well, not a nice feeling.

  I remember one of the medications he had given me caused anxiety and feelings of panic. I was scared to bring it up to him, because well there wasn’t a lot of trust there in the first place, somehow though, I dug deep (like I find myself doing often with chronic illness) and found the bravery to mention the anxiety and panic that had developed on the medication he had prescribed. I was dismissed as a young woman with emotions. I felt like crying in that moment. I remember telling him that this was not normal for me and this medication was scaring me. He told me I would be fine. Obviously, I didn’t believe him even though I wanted to hope that the medication would work. 

  In the end, that medication was discontinued due to not helping my Trigeminal Neuralgia . And yes, the anxiety and panic left with it. My mistrust in the doctor did not however.

  That experience has never left me. It still stings some days. I don't think some doctors think about the impact that they are leaving on their patients. Especially their rare and chronic illness patients. 

  Because we have chronic, rare conditions, we are more often not going to be believed rather than believed. It is very overwhelming at times. It wares on us. We have no control over our bodies and sadly we don't have any control over doctors believing in us either.

  If I had a message for doctors, it would be this, please consider the message you are sending to your patient, even more so to those of us that are zebras. Pause. Our zebra stripes are not going away just because you refuse to see them. Please take time to see the patient and the person sitting in front of you. Hear us. Believe us. See us. Fight for us.

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