‘Please don’t take this away from me!’ On my wedding day, I was covered in hives. I felt like I was dying.’: Woman receives ‘life-changing’ Ehlers-Danlos Syndrome, autism diagnosis at 39

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Disclaimer: This story includes mentions of suicide and may be triggering to some.

“I’ve spent most of my life as a medical mystery. I’ve lived my life since birth with an invisible illness no one could figure out. I’ve always felt this need to prove myself to friends or family members who questioned if I was just ‘too sensitive’ or ‘lazy.’

When I was a child with asthma, anxiety, unexplained weight gain, pain, fatigue, and food allergies, I knew I was different. My anxiety was so bad I would throw up from the smallest amount of stress. I couldn’t go to school or function like the other kids. The pain was so bad, at times, I thought I was dying.

Courtesy of Brandy Haberer

When I was 15, I was diagnosed with Polycystic Ovarian Syndrome. The hormonal issues that come with both conditions are extreme: fits of rage or anxiety over nothing, insomnia, fear of going in public, and thoughts of impending doom. My family, who had their own issues to deal with, bared the brunt of a teenager with a chronic health condition. At 16, we moved into an older house. I was excited about having a larger room in the basement. Little did I know the mold in the basement, that didn’t affect anyone else in my family, would trigger my first official ‘mast cell attack.’ I woke up one day before school covered in hives. My eyes were swollen completely shut. My lips were triple their size. Nothing could explain the searing, burning pain of full-body hives. I went into anaphylactic shock and had to be given an EpiPen shot to keep from dying. This happened almost every day with anaphylactic reactions every few months for the next three years.

Courtesy of Brandy Haberer

Several doctors, medications, and diets were tried, from steroids to even the suggestion of chemo when nothing really worked. It wasn’t until I was referred to a specialist at a very prestigious hospital that I slept my first night without feeling like my body was on fire. I was put on a new drug at the time for organ transplant patients, which just so happened to stop hives for some reason. I didn’t care what the side effects were (and there were plenty). I just wanted to be an average teenager.

That first night, on my parent’s couch, I slept like I’d never slept before. For a few years, I could go to college, work, date, have friends, and even function to the point where I could hide any issues I had without anyone knowing I had a chronic illness. I was eventually even 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. Sometimes that was hard to hide.

Stress from school or a breakup would send me into a place where I couldn’t stop my emotions. I felt like I was drowning, and I eventually tried to end my life. The pain was so much. I felt like I had no control. I was sent to an inpatient facility for teens. When the doctors saw I was on steroids and several different medications, I was sent home after two days and told to get a hobby. When I came home, it was almost more frustrating because 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 question myself. Was I really just crazy? Something deep down inside of me knew I wasn’t.

Courtesy of Brandy Haberer

It was difficult to keep friends at this point in my life. I could only pretend I was okay for so long. It was exhausting, especially when you don’t know why you’re different from everyone else. I would push people away. Sometimes my anxiety would make up stories in my head, stories that 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? 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 began with migraines, then one day in the middle of work, I could no longer see without a large black dot in the middle of my vision. I developed something called intracranial hypertension. 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 vision back to normal. It was a long time before we realized it was the birth control. I managed to go to college, hold down a job, and get married despite it all.

Courtesy of Brandy Haberer

I found an absolutely wonderful husband who supports and loves me no matter what. When we met, I glazed over my health issues. I didn’t want to scare him off and I also didn’t fully understand them myself. It all came to a head about three months into our relationship when I had another one of my ‘mysterious flares’ of pain where I couldn’t move. 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.

At that time, my chronic health symptoms came and went, but I could live a somewhat healthy life despite moments of flares during stressful times. For example, I was covered in hives and in pain on the most special day of my life, my wedding day. I pushed through the pain, still not knowing I had a chronic condition that explained everything. Even after several 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.

Courtesy of Brandy Haberer

I managed my mysterious illness for years until my hives came back in my early 30’s. All the horrible memories from my past came rushing back. My life was stolen from me by this disease, and I had finally gotten it back. I was happily married and lived in a beautiful house. I had my dream job as a lead vocalist in a band, was a professional background singer at a record label, and I had an album on iTunes. I even owned my own business as a stylist! I remember crying out, ‘Please don’t take this away from me, not now!’ I started researching alternative treatments, and I was able to manage my symptoms with a more holistic approach. Chronic illness was always there, lurking in the shadows, waiting for me to stress out.

Courtesy of Brandy Haberer

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 underneath my smile. A brand new house full of the chemicals that come with new building materials was the last straw. I became bedridden, unable to work, breathe, or barely walk from severe pain. I had once again lost everything due to my body. My beautifully furnished brand new home with brand new furniture was now my enemy, and I was in another severe mast cell flare from something out of my control. After only living there for six months, we put it up for sale and moved in with my parents to help take care of me.

After that, I wasn’t the same. The smell of anything set off a list of symptoms. 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, when someone sensitive is exposed to high levels of chemicals, is 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 that I couldn’t leave for months.

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When she would do laundry, I couldn’t breathe. If she and my dad went to the store, the chemicals on their clothes just from being in public would cause me to react. 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 doctor, 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 see that something was wrong physically. 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. She still had no idea what was going on with me and had no real suggestions on how to help.

Why did this happen to me? I know several new homeowners, and this didn’t happen to them. Why me? Looking back, this was a pivotal moment and one of the best things that ever happened. It started my search for answers, and it made me realize I couldn’t keep living like this. I had something seriously wrong with me that I could no longer push through.

Courtesy of Brandy Haberer

That summer, we were finally ready to move into our own house where we 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. The stress from the move sent me into another flare, and my chemical sensitivity came back just like before. I was devastated. It’s inconvenient for others when their shampoo or cologne sends you into symptoms of pain, dizziness, and nausea for days. I couldn’t expect them to understand or change their way of living. I felt trapped. This year of my life was a dark one. I lost friends and close family members. People don’t understand when you don’t get better. It’s an inconvenience to their lives. I could feel the judgment when I spoke about different treatments I was trying. I was ridiculed about being too open and honest with my experiences. 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.

Finally, the support that was initially given soon ran out. It reached a tipping point where I was then told exactly what was thought of me and my ‘attention-seeking’ behavior. I had to walk away from stressful people for myself and my health. It’s during times like this your real friends and family step up and those who love and respect you are apparent. My husband, who I thought I couldn’t love anymore, became my lighthouse. He was stressed and worried, and I could see in his eyes he was scared, but his love and support never wavered. The people who are left after a life-altering event are the really special ones.

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After we were settled, I finally made an appointment to see an allergy and immunology specialist. It was confirmed I had MCAS. He put me on a biologic drug called Xolair. It came with a scary list of side effects but also had a very high success rate. It was worth the risk to me. The day came for my first set of injections in each arm. I had to stay at the office to be monitored for 2 hours after in case of a severe reaction. I did great with minimal side effects for the first month. I remember that weekend I felt like a real person. I walked outside for the first time in almost a year, unbothered by the city smells. For the first time in a while, I had real hope, happy to wake up every day to experience all that I could.

Then the side effects came. The anxiety and chemical sensitivity started creeping back in, until all of a sudden, I was worse than before. I would spend days crying. I felt like I wanted to die. All hope was lost, and I was back to being a prisoner in my own body. When you’ve been sick for so long, sometimes having a taste of what health is like is just cruel. You know it won’t last. You wake up and feel like a human again. You feel like you once did, what seems like ages ago. You go to the gym, run a couple of errands, take your dog for a walk — only to realize, you’re not going to be the person you once were without paying a price. By doing the things you used to do so easily, even if only halfway, you end up on the couch, exhausted and in pain from even attempting it.

Courtesy of Brandy Haberer

Good days are amazing, but sometimes they’re sad. They make you forget about chronic illness for a moment. Only to be harshly reminded that you’ll never be the person you used to be. So you spend your days searching for answers and 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 nowhere to turn, you have to turn to yourself.

My diagnosis took a lifetime. I never gave up. I never stopped advocating for myself until I found the answers I so desperately needed. One diagnosis leads to the next. I noticed a pattern on social media of people with MCAS also having Ehlers-Danlos syndrome. After pleading with several doctors, I finally found one who listened to me and sent me to a geneticist for confirmation.

My intuition was right, and I was diagnosed with Ehlers-Danlos syndrome Type III, and according to my doctor, ‘The worst case of Mast Cell Activation I have ever seen.’ I now had validation about a thought that’s been in the back of my mind since I can remember. For a large part of my life, I would beat myself up for not being able to do things as well as my friends. I couldn’t run as fast, exercise as hard, or handle stress in the same way. Why was I allergic to everything? Why couldn’t I breathe, why did my body hurt and get injured so much? No one knew. When you’re too complicated for the average doctor to figure it out, they usually jump to the conclusion you’re making it up. This is the worst feeling in the world, to know you’re not believed, you have a real issue and need help, but there is none. There’s still a lot that’s unknown about EDS, but now I know what to focus on managing. That has been life-changing.

Courtesy of Brandy Haberer

Later that year, I also found out I’m Autistic. Realizing this at 39 forced me to confront my own internalized ableism toward the autism community. Learning I’m autistic made me extremely aware of just how misunderstood autism is in society. When faced with reevaluating my own view of autistic people, I felt ashamed and embarrassed. When all you’ve seen are portrayals of autism on television that don’t represent the full spectrum and your only interactions with autistics in real life were children who also had an intellectual disability, your view of what autism actually is becomes limited and incorrect.

After my diagnosis as an adult, social media become my greatest source of information from other #actuallyautistic adults. I realized Autism isn’t just the stereotypes I had been led to believe. It’s not a modern epidemic to cure but a different way of processing the world. It made me believe being autistic wasn’t inherently worse than being non-autistic. It made me believe in myself.

Courtesy of Brandy Haberer

Realizing I used to pity the very community I belonged to out of ignorance, in large part to an ableist society, made me sick. It made me want to change that so people can see what I see now. That requires more openly autistic people to break the stereotypes, so others feel safe to do the same. I no longer think being autistic is something I need to fix or some horrible tragedy. Not knowing you’re autistic and living your whole life thinking you’re broken definitely is.

Shortly after my diagnosis, we found out my husband is also autistic and has hypermobile EDS. What are the odds? I deal with chronic pain daily. Growing up with undiagnosed EDS made me believe pain was normal because I didn’t know any different. This was sometimes disregarded because of my ‘dramatic’ nature. But I assure you it’s very real. Every second of every day, almost everything hurts, some days more than others.

Courtesy of Brandy Haberer

My husband, Matt, and I started a podcast to talk about our journey for answers called, The Chronic Couple. We want to encourage others never to stop advocating for themselves if they think something is going on with their body. Knowing why and how to treat it is part of managing it and acceptance of what is.

I no longer hate myself for not being like everyone else. Receiving the answers I had desperately been seeking my entire life made me realize all of those things I used to tell myself were lies. 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. In fact, I was quite the opposite.”

Courtesy of Brandy Haberer

This story was submitted to Love What Matters by Brandy Haberer from Asheville, NC. You can follow their journey on Instagram, Facebook, and their podcast. 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.

Read more stories by those with chronic illnesses here:

‘If I’m forced to self-isolate a majority of the time, you can for a few months!’: Young woman with chronic illness begs for social distancing, ‘Maybe we will become better humans when it’s over’

‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’

‘Did you think we were ‘lucky’ to stay in bed while you go to work? Reach out to us.’: Fibrodysplasia Ossificans Progressiva warrior says, ‘Check on the people you know who have to stay home for disabilities’

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