It Wasn’t All in My Head, After All: What It Took to Finally Be Seen, Heard, Understood and Diagnosed
This post was contributed by Kelly Melideo, Client Care Representative, Zebra Retail Solutions. She is a member of Zebras of All Abilities (ZOAA), an employee resource group.
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I have Yao Syndrome (YAOS). If you’ve never heard of it, I’m not surprised. I hadn’t heard of it either when I was first diagnosed with it in 2020. But what is surprising is how few people know about it when it is “among the most common systemic (affecting the whole body) autoinflammatory diseases in adults.”
It makes me wonder why it took over five years (well, really my whole life) for some of the best doctors to diagnose me with it. But, then again, when you understand how the disease behaves – how it comes and goes – and its symptoms, it’s understandable that it may not be the first thing most doctors worry about.
However, knowing its prevalence, I think it should be. It should certainly be something everyone knows about – that you know about – so that when symptoms appear, the right questions can be asked.
That’s why I am excited to share my story with you, even though I’m admittedly nervous to do so.
I am excited to think I could inspire someone who is going through the same things I went – and am still going – through to get help, to stay strong and to ask the right questions. But I am also nervous because the world will now know my story, and that’s something that feels very vulnerable to me. Will sharing my daily struggles affect how my colleagues and boss think of me? Will it hurt my chances of future career development opportunities? But that uncertainty is scary, especially for someone like me who must work so hard every day to keep my stress levels down (and a certain level of stress comes with any job).
However, I ultimately decided that I wasn’t going to let a fear of “what may be” stop me from sharing my past experiences or current reality. If I can help even one person, then it’s worth it. So, let me tell you a little bit about who I am, how YAOS affects me, and the journey (and pain) it took to get to where I am today…
My story doesn’t start with my YAOS diagnosis in 2020. It goes back to my early childhood. I remember very early on I had strange stomach pain, and I seemed to have a ton of environmental allergies that affected me more than the average child. I remember not being taken seriously by my pediatrician and feeling like I was making it up, that everything was in my head. As a child who didn’t know any better, I learned to ignore my symptoms, which eventually ended up causing a high pain tolerance, as well as my constant dismissal of symptoms, thinking they weren’t symptoms at all but rather something everyone dealt with. This would eventually lead to additional issues later on.
As a teen, I remember getting allergy shots to which I seemed to have no reaction or response whatsoever. Around the same time, over the course of my high school career, I developed more complicated issues with what I eventually learned was undiagnosed asthma. Over time, it continued to get worse.
I remember going to the doctor multiple times during high school because of a very tight constricting feeling in my chest and having issues with breathing. But each time I would blow in the device that tested for asthma, the primary care doctor at the time thought I wasn’t blowing correctly. I’m not sure how many times I had gone back with the same result. Then, one time that I had the nurse practitioner in the office with the primary care physician (PCP), I was completely out of air, and the doctor again made the comment that I was still not doing it correctly. The NP stopped her and said, “This poor girl has absolutely no breath left. She did everything she had.” I remember the doctor being skeptical but treating me for asthma using the in-house nebulizer treatment. She told me that she would see if I went up a .10 on the scale after, as that would be what determined if I had asthma. Not only did I bypass that score, but I went up .90 points on the breathing scale! Nonetheless, my doctor apologized, and I was officially diagnosed with asthma. I remember her saying that given how I handled myself, how controlled it “seemed” like I was, and how it didn’t look like I was bothered, she had absolutely no idea. (I would find myself in the ER many times after that with full-fledged asthma attacks, where the doctors would tell me I waited too long before coming in. However, I had no idea I wasn’t actually breathing the way a normal person was.)
Fast forward to 2017, I wound up in the emergency room due to pain on my right side. I wasn’t sure exactly what it was and, to be honest, I thought they were going to tell me I had bad gas because that’s what it felt like, and I thought I was overreacting. Eight hours later, I was having emergency surgery on a gallbladder that almost went gangrene. The doctors told me they have never seen someone handle the pain and act almost “normal” as I was joking and laughing with the nurses and the doctors.
It was right after that surgery, however, that I felt my health take a nosedive. I started to gain unexplained weight. (My PCP thought I was just eating too much, though my food diaries stated otherwise). The focus of my health became severe stomach pain, GI issues, and my allergies started to become even more extreme, with additional food allergies cropping up every few weeks. I remember asking my provider if I could see an allergist or get a food intolerance test, but she said that they aren’t accurate. She also would keep running complete blood counts (CBCs) telling me that nothing was showing up. To be honest, between the tests and the ER visits, I felt hopeless and very discouraged. My OB/GYN did find that I had high markers for Hashimotos (an autoimmune disease that slowly kills your thyroid), however, my thyroid levels were still in the normal range so, unfortunately, nothing could be done to help. I knew something wasn’t right, and I was made to feel as if I needed to second-guess what I was feeling.
Finally, in November 2019, I wound up in the ER with another allergic asthma/gastrointestinal (GI) episode. I was in the hospital for nearly two days. The company I worked for at the time wrote me up because I had three absences within six months. It didn’t matter that I had hospital documents stating where I was. Granted, a week later when I was taken out of the office on a stretcher because of another asthma attack, they did get the write-up reversed. But at that point, the damage was done, and I saw the company for what it really was and winded up putting in my notice at the beginning of January 2020. Of course, that’s when the pandemic hit, which brought up even more complications.
The silver lining for that last hospital stay, however, was that I had to follow up with the doctor’s practice. My doctor wasn’t available, so I saw another doctor. I remember almost immediately feeling like this doctor actually listened. He never once made me feel like he was brushing me off. For the first time, I finally felt seen and heard. I think that was a huge turning point for me because I got the validation I had been wanting and needing for so long.
He told me what I had already knew: CBCs don’t tell you everything; they just tell you major current issues. I remember playing dumb and asking questions about things I had already discovered in my research about autoimmune diseases. I remember he was so genuine and said exactly the right things. I asked him if he wouldn’t mind taking me on as an additional patient of his – he was the medical director for that specific division of Stony Brook Hospital – and I was relieved when he smiled and told me he would have no problem adding me as his patient. At that appointment, he also gave me a new referral to a pulmonologist he knew from medical school who he felt was fantastic (I would agree with that after meeting him) as well as a fantastic allergist/immunologist. Both doctors are typically hard to get an appointment with, but this new doctor I had just met at Stony Brook Hospital was able to get me in with both relatively quickly.
The one nice thing about the year of the pandemic and having quit my job because of how horrible my health was (and really needing time to get answers) was that I had a lot of time to see doctors and didn’t have to worry about getting in trouble for finally placing my health first. I remember the first time I met the allergist/immunologist. I had 18 vials of blood taken. Yes, 18.
Now, I have never had issues with getting my blood taken. In fact, I used to donate my blood all the time. What I found funny was knowing how much she was looking for and how surprisingly happy I was that I wasn’t going to need to do additional blood tests every few weeks to try to figure it all out. Not only did I need all that blood taken, but I also had about 50 allergy pinpricks to try to discover my allergies and hopefully find a root cause. Long story short, I reacted badly to every one of those pinpricks. “Bad” probably isn’t even the right word to try to use to describe the intense itch and the inflammation I had from those tests. We decided to do immunotherapy (allergy shots). She also told me she doesn’t typically give EpiPens for environmental allergies. However, I was “special,” for lack of a better word. We laughed about it, and I left with a script for six EpiPens.
Over the course of the next few months, I started getting shots a few times a week. I did ok at first, other than the severe itching I would have, but about a month in I had my first anaphylaxis reaction. We had to restart my injections from the beginning, and this time we would extend each dose by two, meaning I would get the same dose for double the amount of time that was called for. I think I only made it a few additional doses before having another anaphylaxis reaction. In addition, every so often I would come across another fruit or vegetable that I never had issues with before, all of a sudden giving me some sort of allergic reaction.
What I learned from everything was that anaphylaxis is not just when your throat closes, and you can’t breathe. In fact, as scary as that is, you know what’s going on and you will get immediate help. Anaphylaxis can take on what I typically call “silent anaphylaxis” as well, which can be more dangerous because you don’t get the immediate help you need. It can cause major complications and issues by delaying emergency treatment. In fact, I have since learned that anaphylaxis is actually anything that causes a reaction with two separate body systems and can include a host of symptoms ranging from a runny nose or cough to a complete closing of the throat.
With so many symptoms, doctors started taking a closer look at me (again). Eventually, I was diagnosed with something called mast cell activation syndrome (MCAS), which is a condition in which someone experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing, and severe diarrhea. High levels of mast cell mediators are released during those episodes. Though I wasn’t excited to have something else wrong with me, I did at least appreciate knowing that it wasn’t all in my head – that it had a name.
However, my doctor didn’t want to stop her investigation with that diagnosis. She actually felt like something else was causing it and wanted to keep digging to see what else may be stirring under the surface. I remember her asking me if I was sure I wasn’t feeling certain symptoms she started listing off – symptoms different than what was on the MCAS list. At the time, because I didn’t really think about it, I said “no.” It was about a month later that it dawned on me that I was actually having certain “symptoms” that I thought were actually normal.
Why?
Because when I was younger, I started believing that what other people would consider “symptoms,” I had come to accept as normal everyday things since no one (back then) could help me find a way to make them go away.
Long story short – and trust me I could go on and on about more details, but alas I’m sure you have plenty of other things to get to – I finally had a diagnosis. After having a blood test done to confirm I had the genetic marker for YAOS (which my doctor had suspected all along), it was confirmed that I did indeed have this other disease. Furthermore, it was confirmed my genetic marker was triggered “on,” which is rare.
So, after five years of looking for a diagnosis, and technically living my entire life with what I like to describe as “having lupus but with major allergies and GI issues,” I finally knew what was going on with me. And I finally had relief that there was indeed something wrong – it was never just in my head. I’ve since been on several medications and, while I won’t go into the details of each one, I will say this: I’m a firm believer that even though modern medicine does indeed work, there must be a balance of Eastern and Western practices. That’s why I feel I have made some of the best breakthroughs in my treatment and healing and am doing so much better than I was a few years ago. The stress and anxiety that I was experiencing from the pain, from not knowing what was causing the pain, and from people not believing I was in so much pain, which actually caused my conditions and symptoms to flare. Once I started to get my stress and anxiety under control, which admittedly is an everyday battle even now, I found that the physical manifestations of my conditions started to become less frequent and less intense.
So, these are the three takeaways I have for you whether you are someone who is trying to convince others you are in pain or you’re not sure you can trust that people are really in pain:
1. Don’t be afraid to advocate for yourself or to find someone who has gone through some tough medical battles to be there with you to ask the right questions if you don’t know what to ask. Never give up. There is absolutely help.
2. Reduce personal stress as much as you can in your life. I highly believe in meditation. Just pick the meditation that works best for you, whether it be yoga, guided, visual, sound therapy, etc.
3. Be aware that people around you are fighting battles you have never imagined – even if they look ok. Some people might have normalized what they feel, not knowing how much they truly are suffering, or they may not be showing how sick they really are. If you are part of a management team, understand that people with disabilities stress out so much about missing work. (Yes, it does bother us). But the more stress we have, the greater the chance we are going to wind up with a flare and miss more work.
Now, I want to give a shoutout to my management team here at Zebra because they have never ever made me feel like I needed to be stressed if I had an emergency that landed me in the hospital or just major stomach issues. And because of that, the frequency of the flares has greatly decreased. That was a big flag that told me that stress and anxiety were causing my symptoms to flare all those years I was living and working in high-stress environments.
So, know that being very supportive of your employees who may be sick can work more for your benefit than punishing them for missing work. Your disabled employees will go above and beyond while at work to make sure that you know that they appreciate you. With your support, their stress will be manageable and the sick time they request may be greatly decreased, even when they do have a flare or issues. I can’t thank my family here at Zebra enough, and yes, I do believe that they are and have been my family with how much support I truly feel.
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