What does it feel like to be treated like you are making it all up?


The last few months old memories have been surfacing. My daughter has recently been diagnosed with a rare disorder: hypermobile Ehlers Danlos Syndrome. We are still trying to make sense of this. It’s kinda horrifying to find out your child has something like this, yet the patterns of the syndrome really do match her symptoms.

Its even more crazy when Mom, aka me, also has a rare disorder: hypogammaglobulinemia which is an immune deficiency. And thats where the old memories come from. The days when I had these odd symptoms and no one, and I mean no one, had a clue why I got sick.

Have you ever been called a hypochondriac? Told you are psychotic and are imagining things? That what you’re experiencing in your body is all in your mind? Ever called up a psychologist to ask if you are crazy or really do have health issues?

Yup. That was my life. Still is sometimes. I’ve frequently been teased about being a hypochrondriac.

In my early 30s, I was working for Apple Computer on a project that was spun out into a different building off the regular campus. It was in a more industrial neighborhood. We’d come in every morning and wipe a layer of black off our computer monitors. I began having extremely painful sinus headaches along with brain fog and fatigue. Symptoms which went away when I was not in the building. (Later I discovered the building was next to a soy sauce factory and the black residue was coming in through the HVAC system.)

My doctor kept telling me I was having an allergic reaction but we couldn’t figure out what the culprit was. I saw a half dozen allergists who told me the same thing and were no help at all. I was ordered home and out of the building during which time my symptoms went away. Of course, it was while I was home and had no symptoms that the workers comp doctor examined me and decided there was nothing wrong with me.

At that point, despite my regular doctor being convinced I was ill with allergic reactions, my then-manger decided I was simply being psychotic and a hypochondriac – and proceeded to write all of that into my annual review. Sigh.

After almost a year of this, I was going to bed tired and fatigued and waking up tired. It was like sleep had no effect on me. The sinus headaches continued as did the brain fog. I had black circles under my eyes and had gained almost 20 pounds even though I had little appetite.

My then-husband daily told me all of these symptoms were just in my head and I needed to meditate and that would resolve all my issues. He was quite frustrated with me and very clearly convinced I was making all of this up.


By this point, between my manager and husband both harping on me, I began to wonder if I was simply going crazy and being a hypochondriac. So I called up a friend who was a psychologist and asked him if there was some way to determine if what I was experiencing was medical or psychological. He proceeded to do a thorough examination of me. In his professional opinion, what I was experiencing was real and medical and not psychological. I as so relieved to have him tell me this.

Not too long after that, I was referred to an allergist who specialized in mold allergies. The first thing he had me do was a mold elimination diet. Inside of 2 weeks, I felt like a new person. I woke up alert and rested in the morning and felt SO much better. I lost all the extra weight. We had found the culprit: mold.

With treatment, my body slowly calmed down and my health began to even out a bit. I wasn’t done with my medical adventures but the path forward began to ease. Years later, I was diagnosed with hypogammaglobulinemia. My immune system is deficient in IgG and that deficiency throws everything else in my immune system out of balance.

The experience of being dis-believed, told I was imagining things, being called psychotic and a hypochondriac stayed with me. I was shut down, not listened to, and told I was an idiot to listen to my own body and follow my intuition about something being off. That searching for an answer was only going to make what I was imagining true. What bullshit.

What I have learned in my adventures with my immune system, is that searching for an answer is exactly the right thing to do. You will know when another piece of the puzzle clicks into place because of the way the patterns match up and things begin to make sense. There is a resonance with what the doctor, tests or research papers say about your symptoms and potential condition that happens.

I’ve learned to listen to my body and my intuition and to allow them to lead me. And to grow a thick skin with regard to those in the world who persist in thinking I’m “making it all up”. They don’t live in my body and will never experience what I experience.

Why has this come up now? Because it’s time to pass on this knowledge to my daughter. To give her the skills to stand strong and to listen to her body and make her own way forward. Managing her health issues is only part of the job. Learning how and when to listen is the other part.