My Disabled Body, Still My Choice.

A woman wheeling herself through a cafe.

Audio:

I’ve faced my fair share of online controversies; I’ve been criticised for my colourful language, for stating the fact that this blog has won multiple awards in associated social media profiles, & for my tough stance on inaccessibility. These are the sort of criticisms I expect to face, & have decisively justified my position in each case. Something I didn’t expect to be criticised for, however, is making an informed decision to take a small risk in order to improve my current quality of life.

Over a span of twelve years with what we now know to be endometriosis, I have a tried a myriad of treatments and only one has truly worked. That treatment happens to be expensive, invasive, and comes with some small risks. According to some, I should not have access to this effective treatment.

Most contraceptive pills simply did nothing to regulate the timing and flow of my periods, and those that did caused migraines as well as leaving the pain on periods unaddressed. It is impossible for me to bear the pain of using a contraceptive coil. The hormone tablets used to mimic the state of pregnancy stopped my periods altogether, but left me in constant pain.

The one treatment that did work, stopping both the periods and the pain, was hormonal injections that mimic the menopause. Unfortunately, there is a small chance that this can degrade bone mineral density, resulting in the fragility of bones known as osteoporosis. The doctors were very reluctant to prescribe this treatment despite its efficacy, because having not asked me, they had decided that I was completely immobile as I was sat in a wheelchair.

It took several months to clear up this disgustingly ableist “confusion”, and I had to threaten to resort to privately obtaining a full hysterectomy if I was denied treatment, but eventually after speaking to the senior consultant, it was decided that I could use this drug safely. I explained that I could be far more mobile with properly treated endometriosis, and that my degree in nutrition gave me the skills and knowledge to moderate the risk of osteoporosis via dietary means, which the senior consultant seemed to at least take seriously when making his decision. I was also going to be given Hormonal Replacement Therapy skin patches, which should actually help to protect my bones, something which had inexplicably never been offered to me before.

Naturally, I immediately posted online about this outcome. Within minutes, I had a nurse in the comments telling me that I shouldn’t be given the treatment at all due to limited mobility, as it was absolutely going to cause a pulmonary embolism. This risk was not even a significant concern to the gynaecology team, as they knew that I had no family history of blood clotting, and that the contraceptive pills I had been on for years carried the same risks without me having an issue. The fact that I already have dietary measures in place to reduce the risk of blood clotting counted for nothing in the eyes of this nurse, and she decided that she knew better than the man who lead the surgery on me and his entire team. Her reasoning? She had once had a pulmonary embolism and almost died. Her conclusion was that, because I was disabled, I shouldn’t have treatment for endometriosis.

I lost my temper.

It took twelve years of constant fighting, begging, and pleading with doctors to get an effective treatment. I had had to deal with ableist assumptions and sexist stereotypes. In all that time I had been in near constant pain, my mental health had tanked, and at one point I even ended up with iron deficiency anaemia. I had tried every other, less risky option available to me.

I had a choice; ineffective treatment, or an effective treatment with some small risks. With the facts of the matter laid out before me, with the opinions of multiple medics, and with my own personal experiences, why should I not be allowed to make that choice? Some people would not wish to take the risk, & that should be their choice. I wanted to take a small risk, of which I was aware of and could manage, yet according to many I should not be permitted to make this informed choice.

If “My Body, My Choice” applies to things like abortion, why should it not apply to a chronically ill person who just wants to not be in as much pain?

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