Kaleigh
Chronic condition(s):
I have POTS (Postural Orthostatic Tachycardia Syndrome), IST (Inappropriate Sinus Tachycardia), TOS (Thoracic Outlet Syndrome), Myofascial Pain Syndrome, and Central Pain Syndrome. I'm also currently being treated for suspected MCAS (Mast Cell Activation Syndrome), plus suspected hEDS or HSD.
How long has your condition(s) played a role in your life? Feel free to share when you were diagnosed/started having symptoms/etc.?
I feel inclined to share as many details of my story as I can in the hopes that someone experiencing the same or similar symptoms will come across this and that it may shorten their diagnostic timeline. In March 2022, I started having episodes where I would get very lightheaded and dizzy. At first, I thought they were low blood sugar episodes, but it became clear pretty quickly that these episodes weren’t that. I sometimes even had these episodes while seated on my couch eating dinner. They continued to happen more and more often— I would wake up in the middle of the night feeling like I was going to pass out; it would happen in the shower, sitting on the couch or at a desk in school, or sometimes on my feet. Not long after these episodes started, I started having constant and debilitating nausea which made it nearly impossible to eat. I went to my primary care doctor with all of these complaints, she ran some labs, and the only abnormal thing was that I had elevated platelets. She said she thought I had a virus and wanted me to follow up with her in 4-6 weeks. My health continued to decline and I started having daily diarrhea and vomiting. It got so bad I went to the Emergency Room. I was told the same thing and sent home. It was a virus, they said. From there, I continued to get worse, and more and more symptoms started popping up. I was sweating excessively, I had severe facial flushing— sometimes on one or both cheeks, with no clear triggers— my brain fog worsened, I developed joint and nerve pain, and my hair started falling out. Thus began my diagnostic journey. Before I was diagnosed, I saw 2 rheumatologists, 2 hematologists, 2 GI doctors, an endocrinologist, an allergist, a dermatologist, a cardiologist, and a psychiatrist. I even went to Cleveland Clinic, hoping they would have answers for me. Almost two years into my diagnostic journey, in November 2023, I was finally diagnosed with POTS and IST by a second neurologist. She ended up being the force that changed my diagnostic journey. She diagnosed me and referred me to a physical therapist for my joint pain, an allergist for suspected MCAS (which I am now being treated for), and a pain management doctor to help with my joint and nerve pain. A week after my two dysautonomia diagnoses, my pain management doctor diagnosed me with TOS, myofascial pain syndrome, and central pain syndrome. It was a whirlwind of a week!
What has been your greatest challenge with your chronic illness?
My greatest challenge with my chronic illness, besides what may be an obvious answer which is the nightmare that is navigating the U.S. medical system and the nearly 2 year journey to a diagnosis, has been mourning my old self. Chronic illness doesn’t just affect the body, it’s all-encompassing, and I was unprepared for the emotional and mental toll chronic illness takes. The grief I still feel for my old self, my healthy self, can be overwhelming. And coping with that grief, knowing that I will never be her again, has been so difficult. I miss who I was before. I miss living in a body that could complete basic activities like cleaning and grocery shopping without feeling like I’m going to collapse. I miss living in a body that isn’t constantly experiencing discomfort and pain. There is so much I feel I have lost, and yet so much that I have gained.
What has been your greatest accomplishment with your chronic illness?
My greatest accomplishment with my chronic illness is that I have used my platform to amplify the voices of others in the chronic illness community and that I have helped others learn how to advocate for themselves in a medical system where the blame is frequently placed on the sick person. I have a “Submit Your Story” series on TikTok where people submit the story of their undiagnosed, mystery chronic illness, and members of the chronic illness community comment and try to help them gather leads. There are now more than 120 submissions for this series and I have published 60 of those stories so far, with the plan to continue to post every story in the order that they were submitted. Being chronically ill can be so isolating, and I really feel like I have created a safe space on my little corner of the internet. We even have a discord server called Chronically Chill, a group chat where people can discuss all things chronic illness and not feel so alone.
Do you have any advice for someone new to the world of chronic illness? What is one thing you wish you had known that would have made your life easier?
Unfortunately, I think most people in the chronic illness community have experienced medical gaslighting at one point or another. I have experienced it several times. I wish I knew that you do not have to sit there and take it with a smile. You do not deserve to be treated that way. It is not in your head. You are allowed to seek second opinions and third opinions, and you are allowed to stand up for yourself. My advice for someone new to the world of chronic illness is to do all that you can to prepare for appointments. Let me explain. Early on in my search for answers, I went into some appointments nervous about my level of preparation. I just wasn’t sure what to expect. And when those appointments went poorly, when I was dismissed and made to feel I was making all of my symptoms up, I left blaming myself. Would it have been different if I had been more prepared? If I had come up with a symptom list? If I had “appeared” more put-together? To be clear, your level of preparation shouldn’t make a difference. Regardless of how you show up to an appointment, your doctor should take you seriously. But an unfortunate reality is that that is not always the case. I left feeling guilty and thinking, “Maybe I could have changed it. Maybe I could have done more.” So now, for my sake, and my sake only, I go into appointments as prepared as I can be. If the appointment goes sideways, I know that I have done absolutely everything in my power to have it go well. The appointment going poorly has nothing to do with me and there is nothing else I could have done that would have changed those doctors’ minds. Prepare as much as you can to remove any chance of guilt. You deserve quality care and to be taken seriously and listened to. Stay strong and keep pushing. You know your body. You know your truth. ALSO: get a little treat after every appointment, every blood draw, every procedure. You deserve it.
Feel free to check out Kaleigh’s health binder template and merch. You can also submit your story to her and join her discord.
And, if you’d like to follow Kaleigh on her chronic journey, please check out her Instagram and TikTok account: @chronic.kaleigh
Feeling inspired to share your story too?
