It is impossible for me to know where my condition began. It could be the
fact that I have always had a compromised system, of which experiencing chicken
pox twice was just the beginning.
Throughout school, I was always exhausted and
finally came down with EBV when I was sixteen. Although all my friends had mild
cases of this, I was incapacitated to the point that I was hospitalized at times
and had to leave school for months while I recovered. By now, I was beginning to
wonder about my health.
I was the "sickest" person I knew with the lowest pain
tolerance, despite eating well and exercising.
By this point, I had gone through
bouts of food poisoning, reoccurring ovarian cysts, migraines, ridiculously
painful periods, and scoliosis. The GP hardly acknowledged me, and told me that
it was normal and that I should stop being a hypochondriac. To appease me, he
ran various tests and after finding nothing serious or conclusive, told me that
he had been right and I should just rest.
From that point, I never fully recovered from the EBV, and over the following
university years, I only continued to decline until I barely graduated. Since
the age of 23, I have been virtually housebound, at the mercy of my boyfriend
who is completely angry and depressed about the situation. He is unwilling to
commit to a future with me if it includes chronic disease. My health insurance
covers very little, and my family is in denial and unable to devote the
resources to help me recover due to financial instability.
Even the many doctors that I have cannot agree upon a path of treatment, and the
only useful help I have gotten was from a counsellor who is helping me cope with
the situation.
Now, nearly eight years later, going from a student at the top of my class with
an unlimited future to a dependent, rather helpless person with no real hope for
healing is something that only others in this situation can understand. Meeting
new people, and having them ask, "what do you do?" makes me cringe. The amount
of shame and isolation at times is unbearable, but there is also a glimmer of
hope that with greater understanding will come better treatments or at least
compassion.