Widely Debated, Still Existing

Dearest readers,

Let’s start this one with a flashback: when I was 18 years old, fresh out of high school, I became violently ill very quickly. After never-ending hospital visits, I was told I had Celiac Disease … and was told little else. I went to dozens more doctors, many of which told me that Celiac disease was impossible for me to have for a slew of reasons, that it was “extremely rare,” and that the very existence of it was questioned.

It didn’t feel like the illness was up for debate – it felt like my existence had doctors in disbelief. I was told that it was more likely that I was a depressed hypochondriac, or that it was stress causing my ailments rather than a physical disease. I was directed to psychiatric help instead of physical medical help, and told over and over again that there was nothing to be done. Meanwhile, I refused to back down and continued to insist that something was seriously, physically wrong with me, and I needed help.

Now, nearly ten years later, things have gotten a great deal better with Celiac disease. More doctors are accepting that it is a true, physical disease, and that there is much to be done in terms of catching it early and treating it throughout a patient’s life.  Of course let’s not forget, the most delicious revolution in Celiac disease, all the food, recipes, and blogs that I could only dream of at the beginning of my diagnosis.

Despite the remainder of some stubborn doctors and ignorant people in the world who make fun of or deny that Celiac disease is a painful disease and not just a fad, life seems to be looking up for Celiacs, and I’m more than thrilled that my country has come a long way in understanding it (though we have an equally long way to go).

All of this is a good deal of why this month I have been left practically petrified (in the literal Harry Potter sense) when twice within this time I have been told by two different doctors that Chronic Fatigue Syndrome, another disease I have, is mostly a “stress thing,” that the medical community is not even sure if it really is a disease, and that it’s existence, and therefore my existence, is again, “widely debated.”

The second doctor especially left me positively enraged after telling me that my month-long Chronic Fatigue Relapses that inflame my nerves and fill my body with concrete were most likely panic attacks. I replied, “panic attacks don’t stay that severe for a month straight.” I explained I know this because I have mental health issues that cause them, and these episodes feel completely different. He agreed to this part, but had little else to say.

All of this has me experiencing a rough case of Deja Vu and I can’t stand it. When I was in the Emergency Room with a relapse a few months ago, the Emergency doctor completely understood that I was suffering from nerve inflammation due to my Chronic Fatigue Syndrome and had no doubt that it was more than just a stress reaction. Another doctor, ironically the same one who later gave up on me, explained to me that people with Chronic Fatigue Syndrome are bio-chemically different from people who don’t have the illness, and the disease is indeed a physical issue.

It’s confusing and frustrating as can be to constantly get mixed signals from the medical community. Sometimes I feel that I’m being told those with CFS are having a mass hallucination.  I understand that doctors do not know everything, and that autoimmune diseases especially are not well understood. I’m thankful to those committing to research to learn more about my diseases, but in the meantime, my only option shouldn’t dismissal by doctors, leaving me to my own devices to figure out how I’m supposed to live despite excruciating pain.

Let me be clear that there is no doubt in my mind that mental health certainly has an effect on Chronic Fatigue Syndrome, and that mental health issues as a whole are as real as health problems get. I have PTSD, Anxiety Disorder, and depression, so believe me when I say that I know how my body can suffer due to the symptoms of these mental health issues. However, with Chronic Fatigue Syndrome specifically, the more I live with the disease, the more I become convinced that mental health is only half of the explanation. Just as I believed with Celiac Disease, there is also a physical part, one that so far seems largely ignored.

I try to advocate for my own health as much as possible. I’m learning to do proper research on my own, to connect with others like me and to use food as medicine; and yet the fear remains that all of this is not enough. I’ve heard of people with Chronic Fatigue Syndrome ending up with organ issues or in so much pain that they lose their ability to walk almost completely.

Of course, there are clinics and doctors that specialize in these sorts of diseases, but I have very little money and only have Medicaid as healthcare, and you learn quickly that the word “Medicaid” causes people to hang up on you faster than the girl from the ring whispering “seven days” into the phone would.  So where am I left?

I wonder if in ten years, just like with Fibromyalgia, Celiac disease and other illnesses, if Chronic Fatigue Syndrome will go from “widely debated” to common medical sense. Again, none of these diseases are perfectly understood, and I still hear of people fighting doctors about them all the time, but it has gotten better.  I hope this is the case, after all, because I am already beyond exhausted of being continuously scrutinized and doubted, then left with little help.

My existence, my pain, my reality, is not up for debate.