Eleanore Vs. This Again? I Mean, Really?

Dearest readers,

Today I find myself in a dental urgent care, which is not my favorite place to be. In fact, earlier today I compared going to the dentist to traveling through the deepest circle of Dante’s Inferno, and I don’t think that’s being overly dramatic in the slightest.  Yesterday, as well as the rest of the week, I decided to adult as hard as I could; I woke up early, did some yoga, and did everything to ensure that I would have a lovely day. Spoiler alert: I had a terrible fucking day.

There were several reasons why the day was unpleasant, but the one that had troubled me the most, by far,  was my experience at the pharmacy. I was prescribed some medication for GERD because the stomach virus I contracted a month ago is not only still damaging my stomach but has given me the new disorder. This was irritating news, however I figured I’d pop by the pharmacy after my long day at work, get the meds, and soon after find myself in bed which at the time was the only place I really wanted to be.

This did not go according to plan. I went to the pharmacy and I told them that I had recently been granted Medicaid which meant that the pharmacist had to call Medicaid before I could receive my medicine. While I didn’t mind this specific part, what I did mind was one of the other pharmacists asking across the counter, “is the medicine for your daughter?” “I think you have the wrong person,” I responded cluelessly. He walked over to the counter and asked me again. “Is the medication for your daughter?” “No,” I said, finally understanding why I was being asked this seemingly random question. “It’s for me,” I said firmly. He looked at me in disbelief, unsure what to say, before asking me my name and quadruple checking the card. I finally paid for my medication and tried to leave faster than the tears could fall from my eyes.

For much of my life the classic phrases of, “but you don’t look sick!” “You’re so young!” and “It can’t be that bad!” Have burned through my heart and mind when spoken by others, especially doctors and friends. It was worsened by my family who never believed I was sick, who constantly accused me of lying and exaggerating  despite seeing me countless times in ambulances and hospital beds with catheters in my arms and more wires about me than a Borg entity.

For about seven months last year I was without medical insurance and it was by far the most frightening seven months of my life. In that time I gathered 5,000 dollars of medical debt that I still have no idea what to do about. I was rejected from Medicaid six times before having another company assist me with fighting for it until finally I was approved.
Not a month later, while on the phone trying to make an appointment, I told the receptionist I had Medicaid. “Why do you have Medicaid, because you’re pregnant?” She harshly replied. “No, because I’m chronically ill,” I explained. A flat”Oh,” was all I received before I was scolded that I better have my card on me at the appointment to prove I actually was telling the truth.

I have expressed before that one of the only things worse than being chronically sick my entire life is being chronically sick and constantly met with disbelief. For all the illness I have faced at such a young age with little support, I feel I at the very least deserve to not be questioned about why I finally have Medicaid. Believe me when I say there is no pride in having to use it, or having to use it as often as I must to keep my health  just barely maintained. Every single time I touch the card it makes me feel as if I have failed myself, because I was never healthy enough to have a normal life or a normal job.

I love pretty, unique clothing and my turquoise prescription glasses. I adore having my nails painted at all times and I enjoy having my short hair trimmed into a steep angle. But none of that makes me any less sick. The picture you see above I took the morning after I spent the night in the Emergency Room last month. I felt sick and exhausted beyond compare, but I had a small glimpse of hope brought to me by a nice outfit I chose to wore.

The reason I strive to put energy in how I l0ok is because of how sick my body usually feels. My star printed clothing covers my aching bones and my stinging nerves. My bangs hide my facial malocclusion that has riddled my life with difficulty most would never have to experience. My polish decorates my fingers that contain inflamed joints along with the joints in my body. It all makes me feel a bit more like myself, especially when my sickness casts a shadow over the entirety of my being. There is a big reason that I don’t look sick; It’s because I try my absolute hardest not to, and most days, I don’t feel like it is working at all (Naturally, when I do feel it is working, I have to snap a selfie).

I’ve written this a thousands times and I will keep doing so until my fingers fall right off my hands. There is no way a chronically ill or disabled person is supposed to look. There is no standard I should be expected meet in order to convince people that my illnesses are real. Moreover, I am completely utterly exhausted of having to prove that I truly am chronically ill. I don’t take joy in my sickness, I don’t wish to brag about them for the sake of pity. But they are a part of me, a part of my life, and the only way to survive my life is to accept them and thrive with them inside me.

Some days I feel as if I am standing right in front of people, speaking, and yet I remain unseen. I hate the feeling of my heart sinking down into my stomach every time I must put the effort into convincing others that I’m not what they assume me to be. I don’t have much energy to begin with, and being forced to waste it on convincing is tiresome.

All people are different in their strengths and weaknesses. Why is that so hard to see?  I need the world to listen and to see people like me for everything that we are. We are screaming to be heard. Please, please listen.

No lyrics today, just a gorgeous chill song to end a frustrating week. Click the blue to travel to the YouTubes. 

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