Pills of Damocles.

Thermometer and pills.

Audio:

The Sword of Damocles is an infamous story about a privileged man who, when a servant of his calls out said privilege, offers to swap positions for the day. When his servant became king for the day, a sword was suspended from the ceiling by a single horse hair, dangling above the throne. According to the king, this represented the constant fear he faced as enemies closed ranks around him.

What was initially a cautionary tale about being careful what you wish for, became a much more relatable story about having constant fears lingering in the back of your mind, when I started to receive treatment for multiple chronic illnesses. Once the most effective treatments had been found, more manageable symptoms meant I got my life back. It made getting an education significantly easier, and frankly without the medication I couldn’t have my current career. It’s a testament to modern medicine.

The problems started when supplies of these medicines was compromised. It’s not rare for pharmaceutical companies to suddenly stop production of a drug because it isn’t garnering enough profit, and sometimes there simply isn’t an alternative available. When trade negotiations for Brexit were sinking faster than the Titanic, I couldn’t access my main pain moderator for over a month. I was down to the last few tablets before supply was restored. Far more common, however, is medical incompetence.

In March 2020 it was decided that I would indefinitely use a drug that replicates the hormonal state experienced during pregnancy to control my endometriosis. While this still leaves me in excruciating pain (painkillers were of course denied), at least I didn’t have to cope with the heavy and irregular bleeding that made my life miserable. The hospital handed me a treatment advice note, said they’d send a letter to my GP, and sent me on my way.

Three months later I am informed that this prescription is being stopped; the surgery claims not to have the treatment advice note I provided them, and had also received no letter from the hospital. Fortunately, I had retained a copy of the treatment advice note as this is far from the first time they have mysteriously vanished. However, this was arbitrarily decided to be insufficient; a letter from the hospital was still needed, and they were not responding to my GP. Finally, after a week of arguing, the GP prescribed that month’s dose of the drug. Whether or not I had the same fight again the following month would depend upon whether the hospital responded to their request for a letter or not.

This isn’t the first time I’ve been threatened with untreated endometriosis, even within this year, although I had foolishly hoped that the photographic evidence of the state of my internal organs would have helped my case. The constant fighting just to maintain access to a supply of semi-effective medication is mentally and physically draining, & I know that the constant complaining gets me labelled as a “Karen”.

My biggest fear isn’t even the pain or the blood, or the fact that I have decades of it left to go. My biggest fear is losing everything else because of the symptoms. I could lose my career, my social life, even this blog, & every few months I have to go through this fight again and again and again. I have to constantly remind doctors that having tissue from my uterus wrapped around my internal organs is excruciatingly painful, and while they fret about the potential of osteoporosis if they treat me, I fret about the cancers (which run in our family, unlike osteoporosis) that untreated endometriosis can bring. I’m repeatedly told how much of a burden I am on the NHS – the National Health Service – that denies me healthcare, the very thing it was set up to do. Is it any wonder I’m depressed and in need of medication for that too, the use of which is also threatened from time to time, when I don’t know if I will be permitted to be as healthy as I can be just a few months down the line?

So here I am, underneath the proverbial Sword of Damocles, fighting some of the most privileged individuals in our society while being labelled a burden for doing so. The worst part of it all is that it is completely unnecessary. The loss of some paperwork has once again threatened my lifestyle; what probably seems trivial to them could mean life or death for me.

Edit: Since writing this piece I have fought bitterly with the gynaecology team and managed to procure six months-worth of the only effective treatment I have ever found. There is no telling whether I will have to continue these battles when that time runs out.

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