CN: ableism, invisible disability, medical negligence, description of symptoms, hospital
I am deaf, and I have Ehlers Danlos Syndrome, gastroparesis, Postural Orthostatic Tachycardia Syndrome and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. I have grown up with people constantly disbelieving my diagnoses, being told it’s all in my head or that I make it up, ignoring my symptoms and judging me based on my appearance. I’m used to it by now. The chronically sick are repeatedly told that we are fakers and the ones abusing the benefits system and the use of mobility aids (just look at what has been going on towards Jameela Jamil recently). Does that make it any easier? No. It is the reason that I hate knowing that I have to go to the hospital because there is a 90% chance it is going to turn out just like this experience.
On February 20th, I woke up and I could almost immediately tell something was wrong. My boyfriend had woken me up to take my meds and to say he was leaving for the day…and it felt like I was in a fishbowl. Everything was drowsy, out of focus, foggy and felt really far away. It took me a long time to concentrate or stay conscious enough to take my morning meds, and then when I next woke up, I was on the floor (I presume I had fainted/blacked out at least once) and was feeling really dizzy, nauseous and couldn’t eat at all with the food staying down (not that unusual, gastroparesis). But then I started being cold despite having 2 jumpers on, as well as the heating and an electric blanket, and then getting hot, and then getting shivers. This was followed by back pain, chest pain, and heart palpitations that were going on for over 6 hours. And counting to when I texted 111, it had been over 20 hours since I had been able to process any food whatsoever. Anyone who knows me is well aware that I am very bad at accepted help. In fact, often I’m forcibly sat down and told not to do anything more or sent home because I am too busy helping others than looking after myself (something I am really trying to work on), so it should come to no surprise that I am not the biggest fan of hospitals nor that it wasn’t until 6 people and my partner had told me to contact 111 that I did so.
After going through my symptoms (which took forever because they kept forgetting I was deaf and couldn’t hear what they were asking, especially when stood behind me), they sent an ambulance and the paramedics arrived. They did an ECG, some other tests (no idea what, I was really out of it), and said they needed to get me to hospital. And wow did things go down even lower from there. I wheeled towards the ambulance, but they stopped me and told me that I couldn’t get into the ambulance with my wheelchair. At first, I assumed this was a joke. I have grown up having to be in hospital so have frequented ambulances as my mode of transportation more than a few times. However, they were not joking, claiming it was a “safety hazard” and that all wheelchair users had to use a stretcher to get to the hospital and then a hospital wheelchair. It was a total load of tosh but there was nothing me or my partner (via phone call) could do to allow them to let me bring my wheelchair that I absolutely relied upon as a full-time user. They put me on a stretcher and moved my wheelchair into my living room and pushed me into the ambulance. In doing so, they stripped me of my independence and my agency.
After we arrived, my partner met us at A&E and went into triage to again go through my symptoms. However, despite us mentioning several times that my partner was with me, they wouldn’t let him in the room due to “not enough space” even though I needed him there for communication help. This is not an unusual situation and is something LGBT+ couples have to regularly deal within healthcare. After the A&E team did an ECG, I was told a doctor would see me and that I would have some blood tests done as well. I was wheeled off and parked on the stretcher bed around the corner of resuscitation out of the way and ignored. If it had not been for the fact that my partner was so insistent in continually asking the nurse what was going on and when I would be seen, I probably would still be waiting for blood tests.
A few hours later, we finally saw the doctor. She was chipper, bubbly, and I was naively and briefly filled with hope. After explaining my conditions, my medications, my symptoms, she looked at me, raised her eyebrows in the “this-is-absolutely-nothing,-why-are-you-here?” expression and told me it was…viral. Of course. The most common answer given by doctors to the chronically ill. Now, trust me, as someone with ME I have had my fair few viruses and infections, and I know they really are not fun. But I know my body and I knew it was not a virus. She told me I looked and seemed healthy, but she would run blood tests in case. I don’t know where she got that perception from. At this point, I was barely able to keep my eyes up from being so lightheaded and was on the brink of losing consciousness. After waiting for what seemed a lifetime and what was at least my partner’s third time asking when the results were back, the doctor came back to us and told us that the basic blood had come back normal and that she’s discharged me. I was furiously upset. I was in so much pain. I couldn’t even move to go to the toilet and was stuck on this stretcher bed with a sick bucket (well, box). I was unable to eat. My vision was really blurry to the point I was really struggling to read anyone’s lips and couldn’t understand what was going on properly. I was shivering. I was getting awful chest pain that felt like someone was driving a knife through me over and over again. After explaining that I was so much worse than when I came off, she shrugged it off and said it was due to being around sick people in hospital. So, of course, I asked for a second opinion.
A male doctor appeared, but my partner alerted me to the fact that the original doctor was next to him. I explained I didn’t feel comfortable discussing things with her there, given that this was a second opinion. After many misogynistic comments aimed at the other doctor, he told me that there was nothing wrong with me and that everything about me was healthy and normal — so I should be happy! He went on and on about my supposed healthy body and that I shouldn’t be in A&E because “this is not what it is for, you shouldn’t be here”. He told me “there is nothing wrong with you” and refused to give me any treatment and sent me home. This in itself took several hours, thanks to the fact that there is only one transport service in the North East that can provide a stretcher, all because the paramedic team had refused to let me use/take my wheelchair.
Doctors do not know nor care for the chronically ill. We are shoved aside like a problem, a waste of time and money, and sent off home and discharged too early. We’re seen as non-compliant and troublesome. Pill-poppers. Drug-seekers. Hypochondriacs. For these reasons and many others that I shan’t bore you with, I am admitted to the hospital quite often, and face dread each time. Hospitals are designed for ill people, for abled and neurotypical people, not for disabled people. Our Healthcare system needs to do better.