What I Want Others to Understand About Life With Chronic Illness

(It is not “possession,” “female hysteria” or “stress.”)

It’s been a hard day.

As a person with chronic illness and chronic pain, you always come upon people who may not exactly believe you.

You’re “too young” to have so many illnesses going on, “too young” to have so many structural problems with your body that required so many surgeries and “too young” to be in so much pain.

But it’s not only that you’re too young: it’s this idea that you’ve not done enough to help yourself to get better and therefore, in some underhanded way, your illnesses are your fault. This is if they aren’t all in your head or you aren’t in fact, “possessed.”

If I sound a little raw, it’s because I am. I’m raw and hurt, and I feel like the person I trust most doesn’t really believe in the validity of my illnesses and quite possibly may feel like it’s all stress related.

Oh, yes. I forgot to list that as one of the possibilities for all my illnesses — stress. While I can concede that stress has a very real impact on the body and can cause both psychological and physical ailments, I will not concede that in my personal case it had a hand in all my physical illness. I don’t have the flu. I don’t have a cold. This isn’t the 1800’s and I don’t have “female hysteria!” And while stress may have a pivotal role in aggravating my illness, it is not the reason I have these illnesses. I may never fully understand why the genetic roll of the dice gave me the medical equivalent of snake eyes; I’ve asked, I’ve searched and so far, I really don’t have an answer.

It’s damaging to the psyche, to mine personally and to all those who battle chronic illness and who are disbelieved, who are told it’s “all in your head” or “it’s just stress.” You are left questioning every decision you ever made for your health and your body as people you love criticize you, pass judgment on you and leave you feeling as though you are not even capable of doing that anymore because surely you’d be in better shape. You wonder if your symptoms, symptoms that you yourself quietly ignored so that you could soldier on with your day, if you were being overly dramatic? You begin to wonder if symptoms are just all in your head and stress induced? If your illnesses, these illnesses that debilitate you, that you take medicine for, that cause 24/7 pain and have changed your life, these illnesses, could just be one Zen moment away from gone?

But then, I am jolted back to the reality that is my life, my body and my mind. The place where I live 24/7, unfiltered. The moment I wake up, my consciousness seeping back into my body, pain is the first thing that greets me. During the day, there can be any number of symptoms that plague me, from joint pain, muscle pain from RA, stomach cramping and pain from the Crohn’s, to mad itching from the chronic urticaria and various other things that I have going on. It’s a veritable potluck of what could happen from one day to the next, and sometimes I am surprised with something entirely new. Does this mean I am “possessed?” Demonic takeover would be preferable at this point because honestly, I almost have more faith in the Catholic church than doctors. And I’m Pagan.

My point here being, there is nothing for me to gain by creating new symptoms, and as the person struggling with them, no one has any clue what it’s like to live like this other than other people like me. If I could wave a wand and return myself to the healthy person I was before all this, I would. We’d all like to have a perfect world where no one gets sick, but we don’t live in one. But I shouldn’t live in one where my own doctors have pit themselves against the chronic illness and chronic pain community, and where my mantra goes a little something like: I’m not “crazy;” this isn’t stress related; this is an actual medical illness, every few days or so, just so I don’t feel guilty for taking time for me and so I can be ready to take on my doctors. This used to be medicine and it’s become war.

Follow this journey on the author’s blog.