“I’ve lived since birth with an invisible illness no one could figure out. So when I finally got an official diagnosis (which took 37 years) I looked at these words not as a burden but as a badge of honor. Mast Cell Activation Syndrome (MCAS) is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks. Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems. That is the formal definition of one of my conditions. It sounds so strange. It’s vindication for every weird symptom or strange medical thing that has ever happened to me. I’ve always felt this need to prove myself to friends or family members who questioned if I was just being ‘too sensitive’ or ‘lazy.’ But a diagnosis meant it was all real. It wasn’t in my head, I didn’t need to push through it, there was something wrong with my body.
When I was a child with asthma, anxiety, unexplained weight gain despite eating the same as my family and having pain, fatigue and food allergies I knew I was different. I knew there was something wrong with me. When puberty hit I literally lost my mind. The anxiety was so bad I would throw up from the smallest amount of stress. I couldn’t go to school or function like a normal kid anymore. The pain from my periods was so bad I thought I was dying. Every month for 6-7 days my life had to stop.
At 16 we moved into an older house. I was excited about having a very large room in the basement. Little did I know the mold in the basement would trigger my first official ‘mast cell attack.’ I woke up one day before school covered in hives. My eyes were swelled completely shut, my lips were triple their size. And nothing could explain the searing, burning pain of full body hives. I went into anaphylactic shock and had to be given an epipen shot (adrenaline) to keep me from dying. This happened almost every day with anaphylactic reactions monthly for the next 3 years. There were several doctors, medications and diets that were tried from steroids to even the suggestion of chemo when nothing really worked.
For a few years I could go to college, work, date, have friends. I could even function to the point where I could hide any issues I had without anyone knowing I had a chronic illness. I was eventually able to come off the medication. The crippling anxiety never left though, like an old friend that was always in the background to remind me I wasn’t the same as everyone else. And sometimes that one was hard to hide. Stress from school or a breakup would send me into a flare where I couldn’t stop my emotions. I felt like I was drowning and I eventually tried to end my life. The pain was intense, I felt like I had no control. After spending only one night in an inpatient facility I was sent home. When the doctor saw I was on steroids and several different medications he understood why I was in so much pain. When I came home it was almost more frustrating. Now I was looked at as mentally ill. I was put on antidepressants and told my illness was all in my head. It made me even question myself. Was I really crazy? Something deep down inside of me knew I wasn’t.
It was difficult to keep friends at this point in my life. I could only pretend I was ok for so long. It was exhausting. Especially when you don’t know why you’re different from everyone else? I would push people away. Never telling them how I really felt. Sometimes my anxiety would make up stories in my head. Stories everyone secretly hated me and they all thought I was lazy or too much to deal with. This made me isolate myself and let very few people in.
When I entered the workforce in my early twenties it was tough. Why did I get so tired and why was I in so much pain at the end of the day? I started birth control to help control my PCOS symptoms, bad idea. It started with migraines and then one day in the middle of work, I could no longer see without a huge black dot in the middle of my vision. I developed something called intercranial hypertension or pseudo tumor (because it mimics the symptoms of a brain tumor). I needed a spinal tap to drain the extra spinal fluid pressing on my skull and optic nerve. I started more medication and saw a new specialist who helped me get my sight back to normal. It was a long time before we realized it was the birth control so I suffered for a few years. With our sensitive bodies people with MCAS have a very hard time taking medication.
Working and navigating relationships is already tough in your twenties and this didn’t help but I managed to graduate, hold down a job and get married despite it all. I found an absolutely wonderful husband who supports and loves me no matter what. I truly feel like one of the lucky ones. It all came to a head about 3 months into our relationship when I had an ovarian cyst rupture. I knew he was the one for me when I saw how he didn’t flinch. He wasn’t bothered by our lives being put on hold because of my health. He looked at me in a way I had never had a partner look at me. He held my hand when I cried and told me he was there for me no matter what. 6 years later and he’s still there. Loving me on my good days and loving me even more on my bad ones.
At that time my symptoms came and went but I could live a somewhat normal life despite moments of flares. I was covered in hives on the most special day of my life, my wedding day. But it was my normal and I put it away and pushed through the pain still not knowing I had a chronic condition that explained everything. Even after three miscarriages I sometimes thought it was me, not my body. I was crazy or made bad decisions, I stressed out too much and brought this on myself. I had an excuse to blame myself for everything.
When my husband and I bought a brand new house in 2016 my body finally gave out. I could use my will to fight through the hardest times and you would never even know what I was feeling underneath my smile. But an ‘off gassing’ new house full of chemicals was the last straw. I became bed ridden, unable to work, breathe or barely walk from serious pain. I had once again lost everything due to my body. My beautifully furnished brand new house with brand new furniture was now my enemy and I was in another severe mast cell flare. After only living there 6 months, we put it up for sale and moved in with my parents. My body was protecting me by telling me everything was a threat. If I went into public I felt like I was dying. One of the neurological symptoms after someone like me is exposed to high levels of chemicals was a severe emotional reaction. I would cry and shake uncontrollably. My throat would feel as if it were closing and my sense of smell was unreal! My mom disinfected her entire house and made a safe room for me. When she would do laundry I couldn’t breathe, if they went to the store the chemicals on their clothes just from being in public would set me off. I dreaded taking a shower because the scent free shampoo and chemicals in the water would turn me bright red. I wanted to die. I went to my Dr. who had no idea what was happening to me because my routine blood work was normal. Luckily she was wearing perfume and it caused a reaction, so she was able to physically see something was wrong. My body turned bright red, my face felt like fire and I started to pass out. She had to speak to me through the doorway.
That summer I did nothing but focus on healing. I took time in nature to do my brain re-training practice, meditate and try to heal my broken body. I was finally ready to move to my favorite place on earth, Asheville NC, where I could look for more answers. My outlook on life changed when I thought I was going to die. I no longer wanted to play it safe. I wanted to live life to the fullest in a place where we loved.
Unfortunately the stress from the move sent me into another flare and my chemical sensitivity came back just like before. I was judged for not acting ‘well’ enough. When I couldn’t pretend and signs of illness peeked through, it was dismissed and met with coldness. The support that was initially given soon ran out and after years of trial and error their patience was exhausted. Finally it reached a tipping point where I was then told exactly what was thought of me. I was pushed to the point of having to walk away from certain people for myself and my health.
Good days are amazing but sometimes they’re sad. They make you forget about chronic illness for a moment. They make you want to do everything all at once because you haven’t been able to for so long. Only to be harshly reminded you’re not the person you used to be and you never will be. So you search, you spend your days searching for answers, trying different doctors. Googling until your head hurts spinning with symptoms of which you have most of. When the doctors won’t listen and you have no where to turn you have to search for yourself.
I finally found an alternative doctor who was an osteopath. I was expecting the focus to be on MCAS but after going over my symptoms and history, it became more about something called Chronic Inflammatory Response Syndrome (CIRS). Until speaking with this doctor I had never even heard of this before. CIRS is the body’s ‘out of control’ inflammatory response to a toxin (i.e. mold, Lyme, VOC’s, chemicals, etc) it can’t get rid of that causes a cascade of damaging effects to the body. He ordered extensive labs, genetic tests and an MRI. I once again had hope this was a piece of the puzzle I had been looking for.
After confirming I had CIRS also known as biotoxin illness and a double dose from both parents of an autoimmune gene, I was put on the correct medication (cromolyn sodium) and I started a treatment called the Shoemaker Protocol to rid my body of accumulated toxins. I also go to therapy once a week to address the metal strain and PTSD that comes with chronic illness. I’m only 2 months in and I’m already having improvement in my chemical sensitivity and brain function. I’m also finding more answers than I could’ve ever imagined. I was trying to find one thing to pin point my chronic health conditions. But sometimes it’s lots of different things. I have genetic tests coming up this year for another condition called Ehlers Danlos Syndrome. It can accompany MCAS and explain all of my body pain and loose hyper mobile joints. It was like one crumb of information led to the next and the next. Piecing together a complex puzzle of several conditions and different treatments for each one. Knowing what is wrong with you and how to treat it is the first step in acceptance of what is. I no longer fight my body or hate it for not being like everyone else. I know what’s going on and why now. And I wake up everyday ready for whatever it’s going to throw at me. And what to do. I’m excited for the future instead of scared. And finally able to let go of my past.
I’ve realized, having a chronic illness comes with a heavy dose of brain fog. I didn’t always make the best decisions in life. But how was I supposed to when my body wasn’t functioning the way it should. I used to beat myself up about some of the choices I’ve made in my past. But getting a diagnosis made me feel like I could forgive myself. And most importantly it made me realize, all of those things I used to tell myself were completely untrue. I wasn’t lazy, I wasn’t crazy, it wasn’t all in my head or something I could just push through or ignore. And most importantly, I wasn’t weak. I was sick and very much quite the opposite. I was stronger than I ever thought I could possibly be, I was a warrior.”
This story was submitted to Love What Matters by Brandy Autumn of Ashville, NC. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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