‘There’s nothing we can do.’ I felt my hopes and dreams slip away. My life was falling apart and nobody could tell me why.’: Woman diagnosed with Ehlers-Danlos Syndrome, ‘I’ll never stop fighting’

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“I’ve endured a lifelong and painful journey of unexplainable health problems that took 33 years to discover the root cause. On the outside, I look like everyone else. But my genetic makeup tells a different story. I suffer from Ehlers-Danlos Syndrome (EDS), Dysautonomia, and the many comorbidities they come along with that plague my body. My entire life has included pain and discomfort daily that became unbearable and crippling in my mid-to-late twenties.

EDS causes my connective tissue to be defective. Connective tissue is the glue that holds your body together. Due to a faulty protein in my connective tissue, it can’t keep things intact and allows everything to slowly fall apart. Dysautonomia is a dysfunction of the autonomic nervous system (ANS). The ANS controls the things your body automatically does without having to think about it, like breathing. My ANS has the worst communication and forgets to tell my brain to pump blood or digest food along with many other things. These diseases have crushed my dreams, and from time to time, have left me debilitated and immobile.

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I began getting migraines, stabbing chest pains, dislocated joints, and muscle and joint pain as a young child. As a young teenager, I started having severe abdominal bloating and pain. Doctors would write off my symptoms as growing pains, sports injuries, hormones, gas, etc. I was ‘young, active, and healthy,’ so nothing was wrong. Being they were doctors, we believed them. My list of symptoms only worsened and became longer as I’ve gotten older. I’ve been on a very long, and lonely, journey to receiving my diagnosis. It’s been a journey of ultimate extremes of darkness, pain, depression, and the ultimate test of endurance. The heaviness chronic illness bears have tested me, my husband, Dave, and my children. It has had an indefinite impact and hand in molding us into the people we are today.

As an adult, I continued to live an active lifestyle and grew into an outdoors, adventure-seeking Utah girl. I was 28 when I had become a professional triathlete, all the while managing each symptom individually until I just couldn’t anymore. I felt like I was on the cusp of life, and then I felt all of my hopes and dreams slipping away. Only months after earning my pro card, I was in the ER with crippling chest pain that would become a daily companion to me, along with many other symptoms. With each new ailment added to my ever-growing list of medical problems, I felt like my life as I knew it was falling apart, and nobody could tell me why.

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I went from being an endurance athlete to barely being able to make it through the day, doing the bare minimum and feeling utterly destroyed physically. I felt like I had no clue who I was anymore, and I was ashamed of who I was becoming. I felt like everything was out of my control. My body’s injustice and betrayal would send me fleeing to a quiet place where I would be undiscovered by my kids. Sometimes, I’d hide in my closet, trying my hardest to muffle the sounds of my pleas and uncontrollable crying. I’d also often cry in the shower. As the tears fell from my cheeks and were washed away, I’d wish they were carrying the sickness out of me.

There are so many times where I’ve been to a doctor’s appointment, emergency room, etc. It was all too often that physicians uttered similar phrases that led me to hopelessness, ‘There’s nothing we can do,’ ‘You’re too medically complex,’ or ‘You’re young and active, nothing’s wrong with you.’ The worst of them all being, ‘It’s all in your head. I can’t help you.’ It’s disheartening when the people who are supposed to help you won’t or can’t. When you’re told this news by a doctor, your physical problems don’t subside. In fact, most of the time, they get worse because you haven’t received any medical treatment.

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That was the case for me. I continued to get worse with more bad days than good. I would get more and more tired after doing such small tasks as showering and making my bed. With my body steadily declining and an uncertain future, my husband, Dave, and I decided we needed to reset our focus on life and what was important to us. We wanted to live each moment as if it were our last. Each day, we’d do whatever we could do to make all the little moments matter the most. Some days are spent snuggling on the couch watching a movie, or riding together in the car as we run kids around.

Some moments are more significant. We set out with a goal to visit every national park in the U.S. with our kids. Every weekend, the coolers would get packed, the trailer would be hooked up to the truck, and we’d set out on an adventure and tackle as much as we could to make memories. Many times, we bite off more than I can chew, and we both pay the price. Dave ends up pulling my weight, caring for me and the kids while ensuring we’re all having a great time. I end up exhausted and in pain as punishment for just trying to be a good wife, mom, friend, and employee. All we want is to make the most of life, instead of letting life make the most of us.

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Doctors finally acknowledged something was wrong when my blood work showed severely elevated inflammation markers and declining kidney and liver function. Still, they couldn’t tell me what it was. So, they just kept monitoring it and doing blood work every so often. So, I kept showing up and waiting for my liver and kidney to fail to the point I’d need dialysis or transplants to finally be treated.

Mentally, I got wrapped up in the guilt of being ‘untreatable.’ I started questioning myself and my symptoms. I felt hopeless and entirely overwhelmed by the immense amount of responsibility for the financial and emotional burden I had caused. I had so much guilt because Dave and my children weren’t getting the best version of me I could once give them. Overwhelmed with shame and sorrow, I would beg my Dave to leave me. I’d tell him how I wanted him to have so much more than me, that he deserves so much more. I wanted him to be with someone who made him laugh, and lived big like we used to.

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So exhausted from work, I would come home and immediately collapse in bed. I’d long for the weekend when I didn’t need to get up. I could finally rest and sleep. I tried to silence my guilt by reminding myself I’m suffering to provide for my children because I love them. And telling myself I’m nearly an equal partner because I’m still contributing. I felt so absent from life. I was consumed by pain, fear of the future, and the loss of myself. No matter what I told myself, living a purposeful life felt unattainable. After years of countless investigations, tests, blood work, diagnostic procedures, and misdiagnoses, the puzzle was finally solved. Only the puzzle piece wouldn’t be placed for about 8 months later.

In the summer of 2019, I was on an easy hike with some friends, one of which I had just met. She had a medical condition I had never heard of at the time, dysautonomia. She was sharing her journey about her ‘doctor husband’ and how wonderful he was. She explained how he’d spent his career chasing all of these discoveries to help heal her, and how well she was doing now. All I really wanted to do was scream at her to shut up, and get in my car and go home. Because there were other friends with us, I exercised extreme self-control and didn’t scream or hit her. I smiled, and engaged in the conversation about her journey, and exclaimed how happy I was for her. But inside, I was jealous and crushed it was her story and not mine. I was relieved when the hike was over and was able to hysterically cry all the envy out while singing ‘Fight Song’ at the top of my lungs.

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On New Year’s Eve, we celebrated with the same friends on that hike and their families at our house. During dinner, my husband and her ‘doctor husband’ were bonding over our similar journeys and struggles. That was the moment when I was, for the second time, unofficially diagnosed with Dysautonomia and EDS. I couldn’t hear it. I couldn’t hear anyone. At this point, I was past the point of fighting any longer. I was utterly exhausted of paying for doctor’s vacation homes and fancy cars in exchange for them to tell me they ‘don’t know what’s wrong’ with me or ‘they can’t help’ or that ‘it’s all in my head.’ I had given up. In 2019, I had accepted that modern medicine was too underdeveloped and incapable of helping me. That my fate would be a slow degenerative one until I die, and we were going to make the best of what we could, while we could.

A few months later, I had a new symptom developed. It felt similar to the time my lungs had collapsed. Dave and I felt worried, so I agreed to see a specialist. Again, we spent so much time at the Heart and Lung Failure Clinic seeing specialists and undergoing every test possible. Nearing, what would be one of my last appointments with them, my doctor explained I ‘had stumped them’ too. I couldn’t hear much after that except for white noise. I was so disheartened and felt like it was just another sword in the coffin. I felt so hollow, as I stared in disbelief this was only another part of my mystery illness. Just a part of my slow, torture-filled death, I was convinced I was living. My doctor then explained how they’d reviewed my case with a medical board that meets weekly. They discuss severe cases together, and mine was one of them. At that moment, the noise returned to the room, and I clearly heard them suggest I might have EDS. This was now the third time someone had told me I may have EDS, and it finally all clicked.

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At that very moment, I replayed the conversation I had on that hike earlier that year with my friend. I had missed the whole point of what she was trying to tell me. At a low point in my battle, I was angry, hopeless, jealous, and exhausted by people trying to heal me with such simple solutions as yoga, miracle pills, or changes in my nutrition. All that anger in my heart left no space for anyone to help me. That whole time, she had diagnosed me and was right. She was actually telling me she was offering me a lifeline to her ‘doctor husband,’ who could help me. I replayed New Year’s Eve dinner, the lifeline that had been provided again, and I turned it away. Those negative feelings and energy I was holding space for inside my heart and mind had cost me months of suffering. Who knows what the long-term cost will be.

That moment was so profound and will stay with me for the rest of my life. It has changed me to be more open, never lose hope, and never back out of the fight even when I want to give up. I had lost trust in medical professionals, all of them. I had just clumped them all together and determined they were some of the most educated dummies I’d ever met. How could nobody know what’s wrong with me? I’ve also realized finding a doctor is a lot like dating when dealing with rare diseases. There will be a lot of first dates that lead nowhere until you find the one.

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I immediately scheduled an appointment with my friend’s doctor husband, who specializes in EDS and dysautonomia. Now, he would become my ‘doctor friend,’ and educate me about this disease and explain its treatment. I was on cloud nine to finally get concrete answers, and get my life back. So much had been taken from me, my husband, and my children. I could hardly believe today was the day we’d been waiting for. My husband and I went to the appointment together. We sat in the patient room, holding hands while we waited for our doctor friend. Only, we didn’t hear what we had expected. I was in complete shock, anger, denial, and disbelief when I learned there was no cure. Instead, we’d put together a plan to manage my symptoms.

After being on such a long journey to obtain my diagnosis, it had never crossed my mind what I was fighting could be incurable. I had searched for a diagnosis for so long so I could be healed. So, learning I was living with an incurable and degenerative disease we can only manage, was soul-crushing. I let myself feel everything. I sat with it. I processed it. Until I finally grabbed the life ring thrown to me by others with these illnesses, and let them pull me into their boat. I read their survival guides and decided to start living and writing my own, just as they did. I then began replacing the tornado of negative feelings with gratitude, opening my heart to what the world had to offer me and what I had to show the world.

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We began managing my symptoms, but it didn’t seem like much progress was being made. In fact, my quality of life began to decrease rapidly. What appeared to be happening intermittently became my constant. I started losing my coordination and mobility. I lost my ability to drive a car. I couldn’t even get myself to the bathroom on my own and required help from Dave. The first time he had to help hold me up and pull my pants down was so humiliating. Just as I thought it couldn’t get any worse, then the day came when I couldn’t even wipe myself on my own, and he had to do it for me. I have never felt so humiliated, and loved, as I did in many of those moments.

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I became extremely winded just trying to have a conversation. I had intense abdominal and back pain and was unable to eat. As a result, my weight began dropping. My ‘friend doctor’ was immediately tipped off as to what was going on, and sent me for a CT scan. From there, I was sent for an ultrasound. Both tests confirmed what he had suspected, and I was sent to an interventional radiologist for further diagnostic testing. All tests confirmed I had several vascular compressions, May-Thurner Syndrome, Nutcracker Syndrome, and SMAS. One of which was the cause of my declining kidney function and required a renal autotransplant in October 2020.

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Although my symptoms are much more extreme and intense than they once were, I feel so much more hopeful now that I have my doctor friend who understands the craziness that is my body. He was so quick to pinpoint the cause in this scenario, and get me into the hands of specialists who also specialize in these rare diseases. I know I wouldn’t have survived the year, or be able to sit here writing this, if it weren’t for my friend and her doctor husband, or his dedication to his career. I’m so grateful for that. I’m incredibly thankful for the way the universe has worked, and for the stars aligning multiple times until I was ready to see it.

The biggest lesson I’ve learned and feel is important to share is to let people help you. When I’m too distraught or too tired to fight, I ask my husband to fight with me. Sometimes that looks like picking up kids, handling dinner, dealing with the insurance company, or scheduling doctors’ appointments. Those are all things he can help take off my plate and ways to show his support for me. Ask neighbors, family, and friends to help. Do you have a neighbor whose son will mow your lawn weekly for $10 to $15? Is there a carpool at school? People don’t always know what we need, or how to help you. You have to ask. So many people were shocked to hear what was going on because we hid it so well. As soon as we were open to sharing our distress, our community showed up for us.

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I think it’s important for others to understand people suffering from chronic illness will never be better. Yes, I had major surgery, but it didn’t cure me, and that’s the case for most people living with these types of diseases. Don’t stop loving or showing up for them because you think they’re better now. They aren’t. Showing up doesn’t mean it needs a monetary value. Some of the simplest things like a card in the mail, or a phone call, can have the most significant impact. The need for love and support will vary, but there will always be a need.

Of course, I’m still afraid and sad for all of the unknowns. I still get upset about this incurable and degenerative illness. But, with an open heart, I also recognize that I’ve been gifted a second chance. I’m ready for ‘Life 2.0.’ I know it won’t look like what it was or what I thought it would be. But I’m consciously trying to be open to the valuable life lessons I’m being taught and live a purposeful life. I’ve accepted and trust that the universe has a bigger and much better plan for me than I could have ever imagined. I will never stop fighting for my health or advocating for myself. And look forward to and fully trust the journey I’m on.”

Courtesy of Moka Best

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