‘Your daughter needs a psych eval. She’s doing this to herself.’ I knew something was wrong.’: Woman describes journey with Chronic Lyme disease, ‘I turned my pain into purpose’

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“I grew up being relatively healthy and very active. My parents divorced about 6 years ago after I had to leave nursing school due to my health. Growing up, my father and I didn’t have the greatest relationship, which then led to radio silence on both of our ends. I was very fortunate to attend a private school to play Division One ice hockey and receive an amazing education, which helped get me into nursing school. It all disappeared as my health declined. I’m now 26 and living in the backfield of my mom and grandmother’s home, living a life I never thought would be mine.

Around the age of 12 when I received the HPV vaccine, my health rapidly began to decline. I started having severe daily migraines and debilitating anxiety, depression, and panic attacks. Because of the relationship with my father, doctors tried to attribute it all to that, loaded me up with medication, and sent me to therapy. They said, ‘It’s all in your head.’ As lost and young as I was, I knew something else was wrong. Thankfully, my mother believed me and kept taking me to different doctors. In front of my mother, the doctor said, ‘Your daughter needs a psychiatric evaluation. She’s doing this all to herself.’

Courtesy of Mikayla Jennifer

This went on for about 6 years until I was finally believed and received an accurate diagnosis. In May 2013 right at the end of my freshman year of college, I received the diagnosis of Chronic Lyme Disease. I, along with my family, was thrilled, I finally had an answer and was ready to swallow whatever pills needed to feel better and move on with my life. Unfortunately, the joke was on me. I had no idea how drastically my life was about to change.

After extensive testing and brain scans, we realized I needed a PICC line to give myself daily IV antibiotics and fluids. My mom drove the 2 hours to pick me up at school during finals so I could go home quickly, get my PICC line placed, get my first dose of antibiotics in the hospital, and then drove me back to school to finish my finals. I don’t think I realized even then what a big deal having a PICC line was or how sick I really was. I just kind of went with the flow and always had that ‘I’ll be fine’ attitude. Fun fact, I ended up having a PICC line for 7 years. I only got it removed earlier this year at the beginning of the COVID chaos.

Courtesy of Mikayla Jennifer

Over 10 years later, I’m still fighting the good fight. Many people can’t fathom how I’m ‘still sick’ after all of these years of nonstop extensive treatments. I’ve faced backlash from people I thought would have been the most supportive and developed the most genuine friendships from strangers I’ve ‘met’ online who have gotten me through the darkest moments. Being on a healing journey is certainly far from easy. It’s messy, emotional, frustrating, and brings loss. It also can be the best thing and will lead you to living out your purpose.

I had such a clear vision of what my life was going to look like growing up and today, it couldn’t be further from that. I always said I’d be a mom by 25, married, living up north, and working as a nurse in the hospital — none of that happened. I remember having to leave nursing school and I was beyond disappointed in myself. My nursing professor told me I wasn’t good enough to continue in the nursing program. ‘You’re a liability. A patient cannot take care of a patient. There’s no way you’ll be able to do this. Picture it like a tree: all of your classmates are at the tops of the trees soaring and you’re at the bottom roots.’

Courtesy of Mikayla Jennifer

I went through some serious depression and had no desire or care to live because of how drastic my life suddenly changed. It’s like I was stuck in time but watching everyone else live out their best lives, achieving everything I ever wanted, and there was nothing I could do about it. If you’re going through your own healing journey and know what I’m talking about, please know you’re not alone. It sucks big time and it hurts. Don’t ignore those feelings but don’t let them consume you either. Grieving that old life will come in waves, but recognize you were given YOUR life for a reason and once you find that reason, you can turn your pain into your purpose.

Courtesy of Mikayla Jennifer

I started sharing my story on social media without thinking anything of it. I’ve always been more of the ‘open book’ type so sharing the real and raw was kind of normal to me. I honestly don’t even remember how or why people started following me and reaching out but I am SO happy it happened. I’ve met the absolute best people on Instagram and being able to share our stories and get through the dark times together has truly been one of the best things chronic illness has brought me. If I wasn’t given this life of Lyme disease, Endometriosis, Dysautonomia, and more, I would have never gotten to meet my now closest friends. How could I not be grateful?

When you hear of someone living with multiple chronic illnesses, you typically jump to, ‘Oh I’m so sorry.’ Honestly, I don’t want people to feel sorry for me. All of the pain led me to share my story, which then led to me receiving messages of how I’ve helped a mother understand her daughter’s pain and another person finally getting diagnosed after years of suffering. Those messages make it all worth it. My pain became my purpose of helping others. They helped me realize I wasn’t alone and we would all get through it together.

Courtesy of Mikayla Jennifer

Growing up, my mother and grandmother were both foster parents to children with various special needs. Because of this, I always knew it was something I’d pursue later in life. I got my foster parent’s license last year in 2019 when I turned 25. I was the youngest in the class and of course, doing it as a single individual versus with a partner. I can’t tell you how excited and proud I was to be doing this on my own, despite what others thought. This was the first ‘class’ I had completed since having to leave nursing school and it made me feel so happy and so full. I was finally making steps towards the life I dreamed of, despite living with multiple chronic illnesses.

Courtesy of Mikayla Jennifer

Of course, nothing in life is ever that easy. Just as I completed the class and had been assigned a caseworker to come to my home, my family and doctor decided to not support me in this process. Although I can understand and see where they were coming from, I don’t think it’s something I will ever fully get over. It’s one of those things that just leaves a scar on your heart you’ll never forget. It’s a weird thing to be at such a good place and for once feel confident in yourself, and then to have outsiders who aren’t actually living with the things you do be able to make a decision for you. It’s not fair and it’s not right. Caring or being worried about someone who’s struggling with their health is more than okay, but don’t contribute to their pain. Only they know their body and only they can make the best decisions for themselves. I really want others like myself to know this. Don’t ever give up on your dreams because of health circumstances. You are more than capable to still achieve all and more of your dreams.

Courtesy of Mikayla Jennifer

Fast forward a year and now I’m actually a foster mom. Brittany didn’t come to me in the most conventional way and it is definitely a messy situation, but I know it was all meant to happen exactly as it has. I was meant to do respite care for Brittany back in August for 2 weeks but that suddenly turned into me stepping into the role of foster parent. Her previous foster family decided it was too much for them to handle. Brittany has autism and is the biggest bundle of joy you could ever meet. She is loud, spunky, and energetic, like the energizer bunny with those batteries that just go forever. Brittany came to me hardly speaking and now literally doesn’t stop talking. I couldn’t be prouder.

Courtesy of Mikayla Jennifer

All the time, I get the question of, ‘How do you do it? How do you take care of someone like her while you’re trying to heal.’ The simple answer is I just do. Is it hard? Yes. Am I exhausted? Overly, but my heart is so full. Healing isn’t just about the physical stuff. Your mental and emotional health is just as important, if not more. It’s like you get this superhuman power to just do things when you’re feeling good mentally and emotionally. Having outsiders doubt what I was capable of because of being sick made me doubt myself in ways I never would have and it crushed me. I think recognizing our life struggles bring us strength rather than ruins us. It speaks volumes when thinking of what we want to accomplish in life.

Although I don’t view myself as anything special, I truly hope my story can inspire even one person. Like so many, I’ve been doubted and put down the majority of my life. Being told and shown I wasn’t good enough was something so normal to me, I grew up believing it and carrying it into adulthood. Being diagnosed with multiple chronic illnesses, of course, only added to the pain at first. I’m thankful for the social media community for showing me I have the choice to turn all of the pain into my power and purpose.”

Courtesy of Mikayla Jennifer

This story was submitted to Love What Matters by Mikayla Jennifer. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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