Of hitting walls and fortune cookies
Or
Living with an undiagnosed chronic illness (but I just got diagnosed and I don’t know what to think of it)
I feel like I am hitting a wall. I hit a wall on my diagnosis journey. The journey is done, they’ve closed the streets and turned the lights off. I feel like I trained—scratch that—I feel the pain of a marathon I am forced to run, and I can see the reaching line, but there is a religious parade crushing through. It’s the same one I’ve seen since I was a child, purple, with Christ looking down on us; he is exhausted too. It’s so close, I can see it there. If I could swim through all those people, dive down the statue they carry, crawl between feet, get stomped, cry, break my bones, but reach the final line with a bottle of water, it would be enough. But the road is cut off.
I spent lots of money on these past medical procedures. I cared a lot when I had to tell my parents the price, the costs, and see the look on their faces when I still had to tell them those were the prices with the insurance. But I pushed through because what if this was the answer I was looking for? What if all my childhood dreams came true? When I was eight, I used to pray to God at night for Him to let me survive until I was 18, for my savings to be many, so as soon as I reached that age I would be able to go to the hospital, beg for help. I used to dream that they would find what was wrong, that I would be cured, and I would no longer dread living. What child dreams that?
I believe I was misdiagnosed.
It’s the first time I allowed myself to say it straight. It’s been five days since it all came down, and I feel like I’ve been crushed by the weight of hopelessness. I went hoping that the doctor would say there was actually something wrong, and he did. And he said exactly what I was hoping for. I felt like my dreams were coming through: EDS and POTS. I thought that after years of silent pain, of years of letting go of all that I loved but caused me pain, it was finally coming to form something—that someone was finally looking at it. I felt like someone had put clothes on me, and an invisible body left out in the cold. I was coming to light, the monster that lived in the crooks and crannies, finally warm. I was no longer a corpse; I was warm.
I fit most of the diagnosis sheet he presented me with; all that was missing were the heart tests.
I feel like I failed the most important test of my life. It’s like the first time I didn’t understand my teacher, the first bad grade, the first time I got yelled at. I felt stripped bare. I feel cold.
I feel like I failed the most important day of my life—because I did. First, they did an electrocardiography, and the doctor said my heart seemed okay, but there could be a dysautonomia, that there could be more than what met the eye based on what I described. An echocardiogram, the Holter test, and a tilt test followed. Three car crashes, in the end. No one explained to me what happened with the brackets, or why I crashed, or why this happened at all. I am not understandable now.
No one explained what they saw that made them say I was okay. I might be wrong. My dad might be right. Maybe I am trying to be special and reach an imaginary diagnosis to feel right with myself. Maybe I am too spoiled, maybe too much of a brat to accept an answer I don’t like. Maybe I am an awful, horrible daughter. But something inside me betrayed me and made them believe I was okay. I just want to understand. What if I am just grieving, and I need a little explanation to face the truth?
The echocardiogram said my heart, and all that could be affected by a possible EDS, was just fine—but that’s not how the doctor explained it the first time. My knees are hypermobile, but that doesn’t mean every step I take they dislocate. Did I understand wrong? Is the part of my heart that might be affected by hypermobility supposed to be out of place every time? Why does no one hear me when I tell them it was a good day, even though usually my heart feels worse? What if I really tricked my body into believing I am sick when I am not, and it just proved I am not?
Holter test. I was just told everything was fine. My mom didn’t let me read the results. I tried to, but I couldn’t understand. I tried to explain that it had been a good day, that when they did the test I felt oddly well, that I had one good day in weeks and it just happened to be the Holter test. I wanted to ask, to beg someone to explain what that heart-crushing sensation was half an hour after the placement. Did it not show? Was it too low? I can get worse—please, I’ve been worse.
Tilt test. I thought maybe things would be cleared. I hoped I would faint. I thought that perhaps finally something crushing was happening, that the massacre would finally make the news. I know the breathing exercises didn’t trigger me as they usually do in my day-to-day life. Was it because I was laid down? Did I do them too clinically? That is not how I usually breathe; that is not how I get my heart to feel sick. Did I follow the instructions too closely?
By this time, I had gained enough confidence to say I did not feel as unhealthy as I used to. I tried to make it clear that I was having a good body day; I tried to explain everything. But the more they asked, the more I felt unheard. They asked, and it was as if someone had read my diary aloud. I thought they were seeing something on those turnaround screens. Then they did the test, and I thought it would be faster. It stood up so slowly. I felt my breathing increase and accelerate, and I thought it might show. I felt like I was coming down, like someone had decided to put me to sleep, but I was trying to stay awake. And I thought, perhaps this is it. This is when I will reach those up-and-down lines of my heart and face them straight at last.
Again, I was just told I was fine.
In the end, he said I didn’t fit the criteria for EDS or POTS. He said I had HSD, which I had already seen on the EDS & HSD website, and I thought he would validate me, validate my pain—but he said it’s not disabling. I can’t put my clothes on most days, and he says it’s not disabling. He dismissed things I had read on medical forums, things I had read on the EDS website, things I studied that seemed to meet wall after wall with him. There isn’t enough research on EDS and POTS, not enough education, verification, or validation. Perhaps he is just going by what has been proven and set in stone.
But he said to my parents, looked them in the eyes, and explained—treated me like a child—that “she will still be able to live normally.” I don’t live normally. He said he doesn’t want to give me anything for the pain because I need to learn to manage it. But I can’t. He doesn’t seem to listen. I’ve been reading for eleven years, since I was eight, eleven years of not getting it right, eleven years of no pills, and yet I have to wait more.
I know exercise will help, I know drinking water will help, I know I need to start swimming, changing my diet, and watching everything—but how can I when most days it takes me hours to get out of bed? Am I not being clear enough? Is there something else I need to say?
Perhaps I just want validation. He tells my parents the pain is real and debilitating, but then he says it’s not disabling. He says I will be able to live off pills, but I can’t even dress myself without pain. Sometimes I feel so sick I am afraid to wash myself with cold water because it triggers something else, and then I have to wash with a damp cloth.
He said there is no dysautonomia, no POTS. They all told my parents there was nothing else. And when I try to ask what is wrong with me—why did my heart do that? Why do these things keep happening to me? How do I deal with all this if it’s not on paper?—he said I have hypotension, and the rest is just how I was born. No other explanation. No medical words. No more words at all.
I was just born weird, had hypotension, and HSD, and I am “not disabled.”
I tried to bring it up with my dad, and the only thing he said was that I “want to keep inventing imaginary diagnoses for myself to feel special.” And the only thing I hear from my mom is, “You heard the doctor. You are just like that.” I understand—no parent wants their children to be sick. And if someone gives you a safe escape like that, you take it. They are not going to question a good thing. Would you question someone who told you exactly what you wanted to hear?
After this, they won’t take me to get more analysis or diagnosis. I’ve been threatened to not bring the subject up again, because if I was “really sick,” then I am forbidden from participating in the exchange student program. And unless my therapist or doctor requests further testing or fights back what the other doctor said, it’s not coming back. I know it’s not coming back, because he doesn’t care. We gave him the diagnosis sheet today, and he was just pissed—something along the lines of “HSD was already obvious,” like he had already known and not me. Another joke I am not part of, but the punchline—I didn’t know.
I don’t have the money to ask for different opinions. I don’t have the medical equipment, such as a pressure pump or oximeter, to try and record more evidence that something is happening.
I tried my friend’s oximeter the other day—he has POTS and showed us how he used it to record his bad times. He made me try it. I reached 135 when I stood up, but I think I had a bad moment of blood pressure because I was really cold, and my heart had been beating like a rabbit. I was literally relaxed on the table with a 122 reading. I was relaxed with a rabbit’s heart, and I felt like my chest might explode.
Today, as I started another symptom diary—from zero once more, with hopes of one day saving enough money for another appointment to request a second opinion—I opened a fortune cookie. It read: “Relax, you are on the right path. Trust yourself.” My mom told me hers said the same. I have my mother’s luck.
But I am fine. I am not disabled. And it’s my fault for not drinking water.