I would have to argue that although ME/CFS is a really hard disease to have because of the general misunderstandings and abuse we put up with from those around us, being completely undiagnosed but suffering from mysterious symptoms is actually harder. I spent six and a half years in that state and those years were some of the most psychologically difficult of my entire life. My heart goes out to all of those people who are undiagnosed right now and struggling for answers. After all, doctors and society don’t recognize symptoms if they don’t have a way to name their cause.
Let me tell you my story about being undiagnosed:
The first episode I had with my illness was on a crowded train in downtown Portland. All of a sudden, the world didn’t feel right. My perception seemed to cloud and my head wasn’t processing information fast enough. I felt like I was going to fall or faint! The train would move and cause the world to spin. I was both in the train but wasn’t as well. My mom, boyfriend, and oldest daughter (who was only a year old at the time) were with me at the time and I reached out to grab my mother.
“Mom, I don’t feel so good,” I told her in a panic, “I am really dizzy feeling. I think I am going to pass out.”
For years, I didn’t know what to call my cognitive problems, foggy brain, and problems with proprioception. All I could explain it as was that I was “feeling dizzy”. Later, after getting a firm handle of what my symptoms really are, I came to realize that this wasn’t a very good description of what was happening to me. As you well know, trying to explain what we deal with is really hard to someone who never experienced it and, at the time, “dizzy” was the only way to get my point across. I also would call it “rummy”…like feeling buzzed on alcohol but it wasn’t quite the same. Dizzy was just my general word for it.
So, back to the train. My mother and Kyoni looked at me and said all color had drained from my face, I had broken out in a cold sweat, and my eyes were glassy, unfocused, and dazed. I was swaying on my feet, more so than just with the train’s movement, and looked generally unwell.
“Okay, baby,” my mother said, pushing me to sit on my butt in the middle of the train, “this line goes to a hospital. Put your head between your legs and wait until then. Can you do that?”
I mumbled my agreement and retreated into my head, staving off the rising panic over this confusing circumstance. At the time, my general fatigue and inability to get enough sleep was chalked up to being a new mother, so I had no idea that this episode and my general fatigue were related.
We all finally made it to the hospital and we headed to the urgent care rather than the emergency room, considering I hadn’t passed out completely, and figuring we would get seen faster in a clinic, rather than the ER.
After going through the usual song and dance of check in, insurance cards, and waiting for an eternity, I was finally seen. The doctor was an older gentleman who listened to what happened intently and asked me a few questions like “did your heart feel like it was racing” or “did you have a head ache at the time”? After fully grasping the story, he ordered an EKG which, of course, came out normal.
“Well,” he told started, “I am going to have a full work up in case this is something. I will give you a referral to a cardiologist and a neurologist. I also will request an MRI and full blood panel work up. Follow up with your main doctor from here on out. From the tests I have done here, I don’t think what happened is anything critical so I am going to send you home.”
“I see. Thank you doctor!” I said, jumping off the table since I felt better.
The doctor crossed his arms and added, “I just wanted to say, 90% of the cases of people who come in here with a dizziness episode have their problems resolved in less than a year and never have it happen again. Of the 10% that have dizziness last longer, I would say only 2% of those ever get solved. I really don’t think you have anything to worry about but I would rather be safe than sorry! Just don’t get your hopes up for answers.”
What prophetic words! This was the first stop in a long journey in the murk that was getting diagnosed. After that, I went to every specialist I could think of: cardiologists, neurologists, endocrinologists, rheumatologists, ETN specialists, dermatologists, gynecologists, naturopaths, chiropractors, multiple general practitioners, sleep doctors, the list just goes on. I have had so many tests, multiple times, I couldn’t possibly name them all! I was poked with so many needles giving blood, I looked like a junky with a ridiculous amount of track marks. I spent days away from home so they could track my heart or my brain waves or sleep cycles in a clinical environment. At this point, I have seen every bone and organ in my body through MRI, CT scans, ultrasounds, and X-rays. No matter what new test I tried, it was all coming back heartbreakingly normal! Either that or the doctors would tell me it was stress, dehydration, or migraines. Apparently, you can have a migraine without actually having in pain in your head. It is horrible that at the time I was praying that the test for some horribly rare cancer would come up positive. I just wanted to know what was wrong and to be validated that I was actually sick!
During this time, I walked a fine line. After all the normal answers were worn out, my doctors wanted to quit looking. “You’re normal,” they said, “so even if these symptoms are happening, they aren’t doing any damage to your body. If they were, we would have seen something! Your brain, heart, liver, kidneys, lungs, thyroid, everything are fine! What you are experiencing isn’t killing you, so just learn to work around the symptoms.” Easy for them to say, am I right?
My rosy views of medical science and doctors were shattered at this point! I mean, I always thought doctors were like investigators! When presented with a hard case, they got excited, and did whatever they could to figure out what the patient had. I pictured Elliot, JD, and Turk pulling an all-nighter surrounded by medical texts, trying to find that one rare, genetic disease for their patient…or Dr. House, limping in and announcing that he was going to find out what was wrong! I had faith in doctors back then. I always thought that if I got seriously ill, they would do whatever they could to make me better. You get sick, you go to the doctor, they take care of you. How wrong I was! When the normal routes ran out, they didn’t feel the need to push further.
But what if, I asked myself, whatever I had wasn’t killing me now, but eventually it would? How would I feel if I found out I am dying and could have been saved if they caught it before it did serious damage to my organs? Not knowing what could happen was worse than finding out whatever it was would kill me. Not knowing meant anything could happen! I needed to know! This was my health!
So, if they weren’t going to look for answers anymore, I decided I was. I mean, if you ever watched the show Mystery Diagnosis, most of those people found the diagnosis themselves or from never giving up and finding just the right doctor. So, I would look for different diseases and tests they could perform. The only problem is, if I went into the doctors and sounded like I knew too much, then they would suggest that I had “Medical Student Syndrome”. They would also imply that a common symptom of hypochondria is looking up different illnesses and thinking that you have them.
This was my razor’s edge and I felt like I was walking it barefoot! If I said too much and seemed too smart, then I was dismissed as a hypochondriac, but if I didn’t say anything at all, they wouldn’t feel the need to look for answers at all and nothing would get done. During this time, I actually would forget I was smart. They treated me like a foolish idiot and it was hard to remember I was otherwise when I was constantly spoken to as if I was insane or an imaginative child.
One doctor accused me of doctor shopping. He was one of the top-rated general practitioners in the area and I got in to see him with the permission of my primary care doctor. My mom encouraged me to do so because she thought, since he had been in practice for so long, that he might think of something that my primary care doctor missed. He never even gave me a chance. His body language and general attitude when he walked into the room was of arrogant disdain.
“Why are you here?” he asked abruptly in a very impatient voice. It threw me off and I looked at my mom, who motioned for me to tell him.
“Well, I have been having this problem and I was hoping you-“
He interrupted me then, “I have read your file and I don’t need any further explanation. You have a doctor working on this, so why are you here?”
My mom jumped in at this point, saying, “No one seems to have any answers so we were thinking that maybe a different perspective might think of something that the others haven’t thought of yet.”
The doctor had his arms crossed and was leaned against the sink. He scoffed at what my mom said and answered, “you really shouldn’t go to another doctor other than your primary. Just because she may not say what you want to hear, doesn’t mean you should go looking for one until you find one that will. Now, I am very busy and really can’t think of anything more that I can do for you. Excuse me.”
My mom was livid. I was just tired. My spirits were so low at this point. If it wasn’t for my mom pushing me to continue looking, I would have given up long ago.
The line between saying too much or saying too little wasn’t the only razor edge I walked. The other was having my parents support me during appointments. At first, it was just me going to appointments, because I was able to handle things on my own and because it was my health so why would I need them? After a while, I decided to change tactics. The doctors weren’t believing what I was saying because they assumed I was overreacting. If they didn’t believe me, then maybe they would listen if I took someone else to tell what they saw, so I started to bring my parents.
That tactic backfired big time!
When my parents would talk, sometimes the doctor would from that point on ignore me completely, like I wasn’t even in the room or was incapable of speaking for myself, like a child. Other times, the doctor or specialist would angrily tell them that they weren’t the patient so they didn’t need to hear my parents at all. The worse though was when they would imply that my parents were encouraging and adding to my delusions of being sick, implying that they were one of the causes of a psychological problem.
The gaslighting tactics would break me sometimes. I mean, they could find nothing wrong! They kept telling me I was fine. I was told in different ways that the medical community thought it was all in my head. Whenever my mother would suggest another doctor or test, I would cry and tell her I didn’t want to go anymore. That they would just tell me I was crazy and what if I was!
“I mean, people who are crazy think they are sane,” I said, “what if I am doing this to myself? What if I do subconsciously want to be sick? How would I know?”
My mother was my hero in these situations. She would say, “I know my daughter. You are not lazy, nor are you happy to be in this situation. You are not the type of person who is okay with sitting around and letting others take care of her. Something isn’t right with my baby! These doctors are just threatened by you, they don’t like not knowing what is wrong. You are not crazy! We just have to keep trying! Please, just go to this one more doctor. We have to keep moving forward.”
“It’s pointless, Mom. They are just going to say I am fine and I am so done,” I would say.
My mom wouldn’t let me stop. “Nothing is pointless. The people who find answers, they never stop or give up. We can’t either.”
One of the main events that gleams in my mind as a vivid memory from the time I was not diagnosed yet was one time at the ER. I hate emergency rooms now. Seriously! I have told my family at this point that unless I am about ready to bleed out, don’t take me to the ER. Before I knew what these extreme episodes were, I went to the ER and had to wait for hours only to have a doctor tell me I am fine and seem annoyed I came in.
One night, I had made dinner and ate. I was sitting in one of the armchairs downstairs and got up to get some water. Dizziness hit me and my vision started to tunnel. I got pale and broke out in a cold sweat. “Uh oh!” I said, before I dropped. My family rushed over. It took me a second to wake up and realize what happened to me.
This episode was different than others. I stumbled over to the chair, barely able to lift my feet, and one of my eyes refused to open past half mast. My words wouldn’t come. They were slippery in my mouth like marbles and I had to force every word past my throat with great effort. Even when I got a word out, it was garbled to the point of being unrecognizable as speech. My family wanted me to go to the hospital. They were convinced I had a stroke.
“NUHNN!” I objected but they bundled me into the car anyway.
The waiting room of the hospital was quiet and surprisingly empty. Despite that, I waited hours to get in. When I finally did, my speech was better. I stuttered a bit and it was halting, but at least I could form a complete sentence. The main hospital here is a teaching hospital. The doctor who saw me was a trainee. She asked me what was going on and my SO, who was the one who came with me, explained the episode.
“This isn’t the first time she has passed out,” she said, scrolling through my record. She then encouraged me to tell her my whole story. So, between me and my SO, we told her the whole story of my years’ worth of mysterious symptoms and episodes of fainting. Despite my general pessimism at this point about doctors, I was truly elated that someone in the medical field, even if she was a trainee, seemed interested in hearing me out. She listened closely and typed everything I said into the computer. She sounded sympathetic and asked intelligent questions.
“Finally,” I thought, “someone seems to care. Maybe since she is a student, she will have a new piece of information that will help since everything is still fresh for her.”
After saying everything I could think of, up to the most recent episode, she stopped typing, and beamed proudly at me. “I think I might know what is happening to you,” she stated.
“What, really?” I was shocked! No one knew what was wrong with me.
She was all smiles as she said, “let me just check with the doctor who is supervising me, then I will discuss my thoughts with you.” She left.
I whispered to my SO, “this is great. She has been the first one in a long time willing to hear everything.”
After a long time, she came back in. “I was right,” she said, “you have a conversion disorder.”
When she said that, my SO said my face fell. He didn’t understand at the time what was going on but I knew. I had just read an article about how Conversion Disorder was listed as one of the Somatic Disorders in the DSM-5, which was basically a replacement for hypochondria, which in turn was a replacement for hysteria. So, long story short, this woman was calling me hysteric.
As she went into an explanation about how there were certain therapeutic programs such as cognitive therapy that any medical center offer that would clear up my symptoms immediately, I tuned out everything she said. My SO smiled and shook the doctor’s hand, completely unaware of the insult this woman had lobbed at me, and not fully comprehending what her sugarcoated explanation really meant. He was curious why I was disinterested in the conversation and cycled between staring at the wall and glaring at the girl.
In the hallway, I heard her in a conversation with the supervising doctor. I don’t think they knew I could hear them. “Did she take it well?” the doctor asked, “many people with those issues get angry when you bring up Conversion Disorder.”
“She seemed to take it really well,” the student said happily, “her husband even thanked me.”
“That’s great to hear,” the doctor said, “high five!” I could hear the slap of hands. It all was so insulting. They were happy that I didn’t freak out when she told me I am not actually sick and felt they did a good job. I was ready to leave this place.
My SO saw my expression of tired resignation, “what is wrong?”
“She just called me crazy,” I said, deadpan.
“What? No, she didn’t. I don’t understand!” my SO exclaimed.
I just sighed and laid back into my hospital bed. “I’ll explain in the car,” I said, “I just want to leave this stupid place. This is why I hate emergency rooms.”
I came in with stroke symptoms and they never gave me an MRI. They listened to my story, called me a hypochondriac, recommended therapy, then discharged me. When we got to the car, I explained what Conversion Disorder really is and that she was basically saying that subconsciously, I wanted to be sick, so my brain was causing physical symptoms to appear.
“I am lucky,” I said, “that I just read about this the other day or I might have not fully understood what she said.” My SO was so angry. He wanted to turn around and lecture the girl but I told him it was no use. That it would just make things worse. Then, I cried all the way home. I felt so stupid for getting my hopes up.
This was my six and a half years of hell. Getting a diagnosis, even one as misunderstood as ME/CFS, was the greatest blessing that could have happened. My heart goes out to those who remain in the uncertain and demeaning realm of the unknown. You are sick! Don’t give up and don’t let them get to you! Doctors are not God and they don’t know everything! They are bullies with good intentions! Be strong!
Blog entry posted by mirespada, Sep 13, 2018.
About the Author
I am a 29 year old mother of two beautiful girls. I have had ME/CFS for 8 years. Before I got sick, I was an archaeologist for the Forest Service (the youngest professional archaeologist in the Southwest!). I now live with my very supportive family: my mom, my dad, my sister, her boyfriend, my S.O., my two girls, my two dogs, my cat, and 4 fish.