Person with ME
Jessica

 

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.