It's All In Your Head

I learned early on in my sick life that if doctors can’t figure out what’s wrong with you, most often times, they will eventually tell you or your parents that you or your child’s problems are not physical, but rather all in their heads.  They make sure they tell you they tested you or your child for every physical ailment and that every test came back unremarkable so the problem most likely is a mental manifestation.

The bottom line is that doctors would tell you either we are making ourselves sick or our parents are making us sick for attention. Unfortunately, I have read about a couple of families whose children were placed in psych wards to undergo mental treatment because as much as their parents loved their children, they thought that by believing the doctor, they were doing the right thing for their children.  They believed whatever the doctor said as if it were God's own words.

Then, there are the doctors who instead of blaming the patients for making themselves sick, they blame the parents for their child's suffering.  If the doctors can’t figure out that it's CVS or the Abdominal Migraines causing the patients' symptoms since CVS is a diagnosis of exclusion, they then turn to the parents and pick them for perfect candidates for Munchausen Syndrome by Proxy, which is a factitious mental disease in which the caregiver fabricates or causes symptoms of a child for attention.  I know of one parent whose children were placed in foster care because they thought she was making her child sick and subsequently keeping her child out of school, so the damage doctors make by a misdiagnosis can be costly and devastating for the whole family.

I remember in the infancy of my illness, after all the tests they performed came back negative, one doctor turned to my mother and blatantly asked her if she was making me sick for attention.  I remember this day clearly because my mother and I never argued with doctors until that moment.  We didn't realize how destructive doctors were until my mother was blamed for making me sick after the social worker ruled out bulimia and anorexia.  At that time, we respected medical providers, even revered them, but that all changed after that moment.  One thing that I didn’t know was that this was just the beginning of my unhealthy relationship with medical providers.  It was only because I came to the realization after several meetings with doctors and nurses that they were humans just like me, and that their shit stinks as do mine. They were not gods. That was when my respect for them dissipated and I considered them my equals.  After all, I suffered years of abuse and neglect from several doctors and medical facilities which made it easier for me to change my view on medical providers and the health care system. 

The day they accused my mother for making me sick was the day that changed our lives forever.  We learned from that day forward, that in order to get answers, we were going to have to fight for my life, and fight for a diagnosis instead of being constantly told that it was all in my head or that my mother had Munchausen Syndrome by proxy. 

I must note that while fighting for answers, and after hearing time and time again that it is all in my head, for a short while, I wondered if they were right.  I questioned myself, and wondered if maybe it really was all in my head, but as quick as that idea entered my thoughts, it left even quicker.  I knew what I had was real, and I knew for damn sure I wasn’t making myself sick. When you get to this point CVS sufferers, slap yourselves for even thinking that!  Doctors want us to think we are crazy and that we are doing this to ourselves because it makes their jobs easier.  The pain, the vomiting and the nausea was and still is so intense that I truly wouldn’t wish this suffering on my worse enemy.

When it comes to Abdominal Migraines or Cyclic Vomiting Syndrome, you need to be resilient; you need to be an empowered warrior because this is going to be the fight for your life, the most important type of fighting.  It is the fight to survive, which is the greatest success anyone can overcome.  You need to believe that what you have is real no matter how many doctors think you are crazy. You have to trust and believe that eventually, a smart doctor will realize that after all the negative test results, and your continued symptoms, that it might be Cyclic Vomiting Syndrome or Abdominal Migraines. These are two disorders that are usually coupled together. They diagnose you with both if you have severe pain involved and sensitivity to light, noise, and smell and if no pain is present during attacks, doctors then diagnose you with CVS alone.  Unfortunately, I suffer from both, and the pain is worse than my labor pains were in addition to my recovery after my C-section.

Again, I can’t stress this enough, Cyclic Vomiting Syndrome and Abdominal Migraines are diagnoses of exclusion.  What that means is that it is a diagnosis that is reached after all the necessary testing have been done and all results are negative.  In addition, there are no tests to diagnose CVS or Abdominal Migraines.

That is to say, diagnosis is made only after every test has come back unremarkable, and the symptoms fits the etiology.  Because of this, unfortunately diagnosing a patient with CVS or Abdominal Migraines may take longer than five years.  I have personal friends who were sufferers for decades before they were diagnosed.  I was extremely lucky because it took me only a year to be diagnosed and that  year felt like an eternity because of all the unexplained suffering and the looming threat of death. That is why I stress that if you think you have CVS, one must be an empowered warrior who never gives up even when all the odds are against you.  After all, it’s your life for which you are fighting.

It is so vital to educate people and medical professionals about CVS.  Not until you find a knowledgeable doctor will you be diagnosed with Cyclic Vomiting Syndrome and/or Abdominal Migraines.  Once you come to terms that it’s not in your head, you can move forward and look on the Internet to find a knowledgeable doctor who is aware of CVS/Abdominal Migraines in your region.

Google the Cyclic Vomiting Syndrome or National Organization for Rare Disorders.  They will help you start your journey of managing CVS/Abdominal Migraines.  Also, be resourceful and look for support groups so that you can talk to other sufferers and know that you are not alone. 

As a matter of fact, Facebook has several support groups, and YouTube has testimonies from other sufferers and information sessions from CVS Specialists.  These avenues were not around when I was diagnosed in 1997, so even though it has only been fifteen years, we have come a long way in the awareness, knowledge, and research on these disorders.  This alone will spare the emotional and financial damage the lack of awareness and knowledge has on CVS sufferers and their families.

All in all, just putting a name to what’s been ailing you or your loved one would truly bring a great sigh of relief, especially now that you know that all your pain and suffering was never ever all in your head.