Yesterday was tough. If you’ve read my columns lately or follow me on social media, you’ll know I’m in the process of having all sorts of things tested, including my kidneys.

The appointment to shed light on whether any of my essential organs are shutting down was supposed to be yesterday. Except it was canceled, and no one told me. So, I applied makeup, wore tights under a dress, straightened my hair, and took a train for nothing. Nada. Zilch.

A stern receptionist at the doctor’s office explained how my tests were “not a priority.” With shortness of breath, I insisted on their importance, explaining the pain I was in. Eventually, she acknowledged the urgency of the tests, but maintained that nothing could be done. She questioned my choices and wondered why I was there. I showed her the message on my phone confirming the date, time, and location of my tests. Halfheartedly, she apologized for the administrative mess that had wasted so much of my energy while I simply tried to see a doctor.

Because we use a public healthcare system in the U.K., I can’t choose which doctors I see, and I must follow a long process, initially seeing a general practitioner until I am referred to a specialist.

I left in tears, shaking.

On my way out the door, I kicked a grit bin. It hurt my foot, and my insides tugged me sharply.

Then, I remembered the invasive, painful examination I struggled through two weeks ago. I recalled lying on the examination bed, with toes curled and my voice breaking, as I begged the universe to make my ex appear so that he could hold my hand, because “I can’t do this anymore.” It was another traumatic episode, and I had nothing to show for it.

Thirty minutes later, a flurry of messages flooded my WhatsApp: “You must complain about this Jess,” and “Call the other [doctor’s office] and urge them to locate your records.” All true, brilliantly expressed advice. Except it was a to-do list, and I was in pain, exhausted.

Since Jarvis can’t type anything other than ‘sausages,’ I only got me.

During the flare-ups, it’s just me. Unless you happen to live with me and occasionally find me on my knees, every horrific symptom of this disease is suffered by me, and no one else.

Just little me, unable to work like most people. Endometriosis isn’t widely recognized as a disability, even though sometimes it prevents me from walking or even sitting on a chair. To make ends meet, I have only my brain and my fingers to type, form coherent sentences, and correctly interpret medical journals. There is only one money-generating machine in my room, and it’s not the wiener dog with no tail.

Most of the time, I am drained by physical pain and chronic fatigue. I have no family to fall back on, not even for an afternoon visit or a cup of tea. I have an incredibly supportive and amazing bunch of girlfriends. Yet, they are not my personal assistants.

I probably won’t write the letter of complaint that I should. I won’t call the other office straight away and insist on being referred. Today, I will be mostly horizontal, crying because everything I did in the past three weeks — the emails, the research, the fighting for myself — bore no fruit.

Because of an administrative mess, all of my efforts have been for nothing.

In a few hours, once I am done crying, I will get up. I’ll head to the bathroom and wash my face. I will walk Jarvis, while hiding under shades and a huge coat so that no one will notice my swollen eyes or the fatigue. Tomorrow, I will open my eyes slightly wider, flex my muscles, and convince myself that I can do it all over again.

Sometimes we have a world of people, and sometimes all we have is ourselves.

There is a certain feeling that comes when no one can truly see what you’re going through inside. Except, I know that if you’re reading this, you probably understand what I’m talking about.

Which means that as well as being an army of me, there’s also an army of you.

Thank you for your comments. Your messages give me purpose. I can only hope the words I write give way to your voice, too.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to endometriosis.