Our Founder’s Journey

When it comes to not being listened to or taken seriously by medical professionals—that’s the experience I have had throughout my entire life.

Childhood Pain With No Answers

It started in childhood when I had aches and pains in my back beginning at the age of 8. My parents took me to multiple doctors, but nobody could find anything wrong with me. Some doctors and family members even insinuated that I was making it up for attention. The pain migrated to my neck, and it seemed like every few years a new symptom would show up, mostly on the musculoskeletal front. I was also super uncoordinated as a kid. I had good hand-eye coordination but couldn’t do anything that involved strength (ice skating, skiing, dancing, swimming, etc.) and people just thought I was klutzy and uncoordinated.

The Beginning of Daydreaming

I was sick of living with this pain that nobody believed, so I began escaping into an imaginary fantasy world. There I would take my favorite TV shows such as The Brady Bunch or Little House on the Prairie and make up new episodes in my head. While doing this, I would spin in circles while twirling a string. Sometimes I would add a character that was similar to me, but she would have real problems that everyone believed and understood like cancer.

Playing The Game

My family called it “playing my game.” It wasn’t a big deal when I was a young child, but it became a problem as I got older and the pain got worse. The doctors kept telling me nothing was wrong with me, and so I started to daydream more and more.  By junior high school, I realized that I preferred to be in my head in my fantasy world over being in reality.  I began to feel like the daydreams were taking over and becoming compulsive. I stayed up all night spinning stories instead of sleeping.  When I was with friends, I was always only half listening to them. (by the 5th grade, I had stopped the need to spin in circles when I daydreamed and could do it without anyone knowing) By late high school, I went to therapists and other mental health professionals who thought I was completely normal and told me that everyone daydreams.  Much like the doctors I went to for my physical ailments, they just did not listen to me. I wasn’t delusional, because I always knew the daydreams weren’t real, but having to balance fantasy and reality was becoming overwhelming.

Above & Beyond

Flash forward to adulthood when I started solving all of my problems on my own. I went to a psychiatrist who had never heard of the daydreaming issue, but he prescribed an SSRI (Paxil and Prozac are typical examples of SSRIs) called Luvox (Fluvoxamine), which is particularly good for people with OCD. After several weeks on the medication, my fantasy characters that I had lived with my whole life disappeared. I never worried about the daydreaming again. I still enjoyed daydreaming, but it was totally under my control. Unfortunately, I still didn’t know what was wrong with me physically.  I started doing my own research. My brother was a doctor at this point, and I borrowed all of his passwords for medical journals and started going on patient chatrooms. Through this, I became convinced that I had Myasthenia Gravis (MG). I read many people’s accounts in patient chatrooms, and the ones with MG seemed to have the same symptoms as me and felt exactly how I did. Not one doctor believed I had MG, because they only learned about severe cases of MG in medical school.  Since I could walk and breathe on my own and passed their five-minute strength tests, they didn’t think I had MG.   I insisted they run the tests anyway.  When the tests were done, it was discovered that I did, in fact, have MG. The doctors were wrong. It was because of my instance that I was able to get physical therapy, medications, and surgery to help with MG. 10 years later, I was in the best physical and mental health of my life.

On The Hunt

In my thirties (despite daydreaming no longer being an issue for me,) I stumbled upon websites where thousands of people were worried that the imaginary fantasy worlds they had created were taking over and becoming compulsive. Just like the previous version of me, they knew their daydream worlds weren’t real, but they found it exhausting keeping up with both the real and the imaginary.  My whole life I tried to find someone who daydreamed liked me, but I always came up empty-handed.  Yet now there were thousands of people on the Internet with the same experience I had.  I went back to school to study psychology and started researching what we now call maladaptive daydreaming disorder (MDD).  I, along with researchers including Dr. Eli Somer and Dr. Daniella Jopp, are hopeful that one day MDD can get into DSM (the manual that mental health professionals use for diagnosis.) I also had myself written up as case study to get the word out about MDD for all the thousands of people on the internet who were living with the burden of balancing their two worlds.

Online Community & Doctors

After a really great 7-8 years; I was pain free and in good mental health when my life was disrupted by an illness all over again. I took an antibiotic called Levaquin (in the family of fluoroquinolones,) and I had a crazy reaction where every muscle in my body became weak and painful.  After only four pills of Levaquin, the weakness and pain started in my legs, before it moved to my arms, neck and back.  It hurt to walk, lift up my hands or type.  It felt as if bricks were tied to my legs and arms.  Doctors initially thought it was an exacerbation of my MG (as Levaquin is contraindicated for someone with MG and never should have been prescribed), but it turned out to not be the case. Doctors are still divided on whether it’s all Levaquin side effects or if I may have a new neurological disease. Yet again, doctors either didn’t believe me or didn’t know what to do with me.  And again, I found that there were thousands of people on the internet who were going through the exact same thing as me after taking Levaquin or Cipro (both are in the fluoroquinolone family.) The good news is I’m getting better. It’s been two years, and I’m nowhere near where I was before I took the antibiotic, but I am definitely getting better.

Listen & Empower

MG, MDD and a severe reaction to a fluoroquinolone antibiotic are the particular diseases I have. However, in doing research and talking to people, I know there are people with many different disorders who are not being paid attention to by doctors or researchers. So this site is not just about one or two particular disorders, this is for all of us who are struggling with chronic pain and/or undiagnosed illnesses.  No doctor should ever tell someone that something is all in their head!  Patient support websites and chatrooms have a wealth of information and are being ignored by doctors who call them unscientific. Maybe they’re not scientific, but why aren’t they spurring ideas for research? My quest is to get doctors to take these sites seriously and to empower patients.

Taking Charge

I’ve been thinking, how does this crazy illness thing happen to the same person three times? I think they could all be related. Perhaps having MG predisposed me to whatever neurological or autoimmune problem I’m having now due to the antibiotic reaction. The retreat to fantasy worlds was most likely because my pain was never taken seriously as a child. However, if this has happened to me three times and not one doctor took me seriously—then that means I was meant to be an advocate for people taking charge of their own healthcare.  I also need to find out why doctors aren’t listening when there are thousands of us on the internet posting about MDD, about problems due to antibiotics, and more. The medical community is not paying attention, and it’s up to us, the patients, to make them.