I would like to start by thanking my friend Beth for sending this video to me. It took awhile for me to watch it all the way through. It’s hard for me to hear someone talk about how real the symptoms are of these “invisible” illnesses, how ignorant the medical field can be, and how devastating it all is to our lives as the chronically ill. I have never really said too much about the beginning, when I first started getting sick. To be honest, I try not to think back on it too much as it makes me sad, it takes away from how hard I’m working now, and the progress (although extremely slow) that I have made.
The extreme fatigue, the anxiety, the feeling like I was unfocused, the constant illnesses, the gastrointestinal issues, the “adrenaline surges” and the pain that are all caused by my illnesses were disrupting my life in big ways. When I say “extreme fatigue” I’m not just talking about being tired, it is a kind of tired that never goes away, no matter how much rest you get. I can remember pulling over in gas station parking lots at six o’clock in the morning on my drive to work for a day shift because I could not do the whole drive without dozing off. I remember getting home from day or night shifts and collapsing on my bedroom floor crying because I had made it through another string of shifts and I was finally home. The anxiety was related to the fatigue, being constantly sick, worrying about my job, and worrying about what was wrong with me. When I say that I was unfocused, I more than anything felt like I was living life in a daze. I was studying for school and I would get through a whole chapter (with taking notes) and I would realize I had no idea what I had just learned about. I saw a lot of doctors, including specialists, but they never believed me. I was told multiple times that it was all in my head, I needed to be put on anti-depressants, I needed to see a psychiatrist, and basically I was told to suck it up, stop being emotional, and get over it. But, I fought back!
I told my primary care physician (PCP) at the time that he was wrong, a healthy, young female who is excelling in her career, her education and her personal life does not just turn around and decide to fake a bunch of symptoms that ultimately ruin her life. I told doctors that I had a lot of dreams, a lot of plans and a strong ambition to keep moving forward towards reaching my goals but I was fighting a body that would not work for me. I had not just suddenly woken up one morning and decided to throw it all away. So, due to constantly being let down by doctor after doctor, I pushed myself as hard as I could to still appear as if everything was just fine, even though inside I was screaming and wondering what was happening to me. Then I learned a very valuable lesson: pretending that something isn’t real doesn’t just make it go away. So “sucking it up” and “pushing through it” most likely caused my illnesses to get a lot worse until one day I could not take it anymore and I finally broke. I had to leave my job, give up school and give in to my body and at this point, even I began doubting me.
I consider myself a little bit lucky because I was able to drop my former PCP and apply for a new one closer to home. That is when I found an amazing doctor who believed me, right from the very first appointment I had with her. She sent me right away to a specialist who also believed me and from there it all started piecing together. I now have eight confirmed diagnoses with testing lined up to rule out or diagnose more. I take upwards of sixteen different medications a day and I can barely leave my house. So why did I get sick? Who knows? What caused it? No idea. Do I wish doctors had listened to me earlier? Yes. Would it have made a difference? Hard to say, maybe it would have. Maybe, I would have been able to continue my life while treating my illnesses or maybe it had to happen this way because I needed to find the doctors that I did. I could honestly play the “what if” game all day long but it really won’t change anything. I do often wish though that I could go back to the doctors and specialists who told me I was just emotional and depressed, I feel it would be cathartic to throw my medical file at them now and say “See! I f***ing told you!!”
I wish they could see now just how much I suffer on a daily basis, how frustrated I get when I can’t do simple things, how I can’t eat, I can’t walk a flight of stairs without an increase in symptoms, how I wake up every morning in so much pain that I have a routine to follow so I can manage the whole process in steps (this is literally just to get up and out of bed). I wish they could know how it felt losing my drivers license because I was pre-syncopal multiple times a day from my POTS so I was no longer safe to be driving. The list is endless and I’m fairly certain not one of them would give a damn. There needs to be some kind of change, I have been told numerous times by doctors that the diseases I have are rare so they doubt that I have them, surprise I did and I do! They’ve said that they do not believe in NIDS (also known as: myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS)), therefore, I cannot have it and yet I DO!!
This is why awareness is so, so important. It was this video that gave me that last little push I needed to make a decision to start a blog and talk about very personal things related to my life. If I can help educate one person, if I can help educate one doctor to understand more about these illnesses, if someone reads my posts and they have a light bulb moment that helps them get the right diagnosis and the right treatment, then I’ve done something to make a difference. Just because you have never heard of it, doesn’t mean it isn’t real and just because you think something is rare, doesn’t mean it is. POTS is NOT rare, it is rarely diagnosed!
Now that you have an idea of how it all began, in my next post I will talk about the “invisible” illness that is mentioned in this TED Talk video, myalgic encephalomyelitis (ME) or as my former specialist (she has retired and I have a new one now) refers to it, neuro-immune dysregulation syndrome (NIDS).
Wishing You All Health & Happiness,