Written in 2020
The coronavirus pandemic needs no introduction, nor does the mandatory wearing of masks or cloth face coverings in all public spaces, including public transport and healthcare settings. There are exemptions to these rules regarding the wearing of face coverings which allow people with certain medical conditions or other difficulties to enter these spaces without a face covering (although, as we will discuss, this exemption does not apply everywhere). Although the concept of hidden disablities is being talked about more, the general negative attitude to people living with disablities or long term health conditions prevails, and although I could write several hundred pages on this theme, that would just be a precursor to the main topic of this piece.
For the past decade I have been regularly seeing the gynaecological service to monitor pre-cancerous cell changes in my cervix. There were years of repeat biopsies and monitoring before the decision was taken by the clinical team that I should have a LEEP/LLETZ procedure to remove that portion of the cervix with an electrified wire. Sounds a bit scary doesn't it? Well, it was, and when they stuck the patch to my knee to “ground” me, that's when the panic kicked in. For context, I was incredibly anxious about the procedure, which I had been assured that “most women” manage while fully conscious. I was prescribed diazepam to calm me prior to the surgery but even through c10mg of diazepam I still managed a full scale panic attack and shutdown. They then agreed I would have the procedure done under a general anaesthetic (which I had requested initially, suspecting that I wouldn't make it through the surgery awake).
Since then having a regular smear test has been very important due to this history, and although I now require a light sedative to get through a standard smear (due to the trauma of the above) I know I need to have this checked regularly.
At the start of this year I saw my GP about some symptoms I was experiencing that resulted in me having a blood test, and another, and another until we'd done about 5 over the course of a couple of months. One of these tests was done at the GP surgery after mask wearing inside GP surgeries was enforced (at this stage they still weren't required in other publically accessible places). Having struggled to find a face covering that didn't want to make me peel my face off I managed to tie a silk scarf round my face, vigilante style, and have the blood taken. After this I experienced a shutdown which I attributed to the mask wearing (I could still feel it on my face 40 minutes after removing it).
Since that point in time, mask wearing has become mandatory everywhere and I have experienced a couple of very long, intense shutdowns as a result of wearing a mask (even for a very short time) and the anxiety of being berated in public for not wearing one and not being believed about my genuine inablity to wear one (if I can look you in the eye and explain why I'm not able to wear one, I must be putting it on, right?). I now get my shopping via click and collect, my repeat prescriptions are now ordered online and delivered by post and anything else I need comes via online shopping. I have not been to a public space, except the petrol station (where I can pay by card through the night pay window and not have to enter the store) or the pub, where I always sit outside, since the 24th of July (it is now the start of September).
During this time I received my invitation to have a smear test, and have been referred to Haematology due to high iron levels on the repeated blood tests. They want to rule out (or confirm) a bone marrow or blood disorder which could be a serious issue and one which means I would technically have to shield. The problem is that I can't have either of these tests done due to the need to wear a mask. But there are exemptions, I hear you say, and this is where the situation becomes worrying. Even if you are exempt from wearing a mask, my experience is that you still have to wear one in healthcare settings unless you're taken by ambulance with an immediate risk to life. This means that effectively, I am denied access to healthcare unless I am actively dying.
I called the hospital, and explained the situation, even offering to wear a motorcycle helmet as a face covering (the even pressure and total head enclosure of this is bearable for me and doesn't trigger a shutdown in the way that a normal mask does). This wasn't acceptable, and it was the same case at my GP surgery. However, the staff went above and beyond to liaise with the nurses and ask if any of them were willing to conduct the two tests without me wearing a mask.
This was really hard for me to do, because advocating for myself is hard when I know that my normally eloquent self, with all the eye contact and the appearance of intelligence is not the image that people associate with autism, and I have something of a complex around this (see above commentary on the intrinsic disbelief of people with health conditions). Additionally, talking about the issue compounds the trauma of it and makes even discussing mask wearing a potential trigger for a shutdown.
What really stood out for me in all of this is that although advocating for myself is hard, and often fruitless, I can do it. We're all told we need to learn to say “No”, but I do, and nobody listens. “No” seems to be heard as “I have a specific reason why I can't do this but please, tell me it doesn't matter, or that “most people” don't have a problem with it, or give me some kind of solution that won't work which I then have to dissect and explain. It's exhausting, makes me feel like a burden on the world, and is sometimes traumatic, but I am sometimes able to advocate for myself. Many people are not, regardless of the condition(s) they are living with. Many people have notional access to advocacy support, but may not be aware of it, or use it.
What happens to these people? Do they simply go without healthcare because they can't negotiate a way around the problem as I was able to? That would have been my route had I not fought for my right to access healthcare. The alternative was booking a week off work so that I had space for a very long shutdown (the most recent mask related one was 5 days of low to no functioning), and I don't think anyone would argue that I should have to experience a serious mental health crisis for the sake of access to healthcare that for me, cannot simply wait.
With the regards to the safety of the nurse carrying out my smear and blood tests, there is a relatively low risk. I am allowed to enter the hospital and go to my office there without a mask (I don't have any patient contact and only have to go through one door which is also used by patients) but this is the only inside space I access except for my parents' house (who go out very infrequently and get their shopping delivered etc.). I thoroughly disinfect anything that comes into the house and have no close contact with anyone, so the chances of me contracting and/or passing on coronavirus are extremely low – I would not enter my parents' house if I considered myself to be a risk as they are both clinically vulnerable.
See part 2 here.