Discrimination and non-visible disabilities
Sophia, one of our former Change 100 interns, talks about how accessibility goes beyond physical barriers. It stems to attitudes as well.
I have lived most of my life struggling with anxiety and depression. This has affected every part of my daily life, from my family, friends and relationships, to jobs and education. Like most people with severe debilitating depression, my health and general wellbeing have become a secondary concern.
When I was at my worst, I would go days without leaving my bed or speaking to anyone - regularly alienating myself. I also have a very illogical reaction to being confronted with any health professional, which results in panic attacks, severe sweating and uneasiness that lasts for days.
My experience at the dentist
It is because of my condition that I hadn’t visited the dentist for years until October 2019. I was very nervous because, in those 5 -10 years, I had developed a chronic pain condition which was getting worse each day. The idea of being in more pain filled me with dread.
Before I even arrived at my appointment, I knew the situation wouldn’t be good. To give you a bit of background I was about to start a new job in three weeks. I had planned enough time to have any fillings or procedures done, or at least I thought I had.
I had been in severe pain around my jaw and teeth for the last few weeks and had, of course, googled everything and scared myself before I even walked in. The dentist checked my teeth and said I needed four fillings and to come back in a week. She noticed my hands shaking the whole time, and calmly told me she would do everything she could to support me. She said that she had worked with a lot of anxious patients before. I felt a bit calmer walking in a week later and closed my eyes as the chair went back.
Having a procedure done without my permission
Several injections numbed my mouth, something I am terrified of. But I immediately knew something was wrong. When the procedure began, I could feel everything - this wasn’t normal. The dentist gave me two more injections and confirmed I would not feel a thing - this was not the case.
I sat in that chair for over an hour in complete agony. My hands shook as anxiety took over my whole body. The familiar chronic pain and nausea hit me like a brick. I had had fillings before, so I knew what to expect. But this was more painful and uncomfortable than I remembered.
I checked the clock several times. It was supposed to last 20 minutes. Before the procedure, she had talked me through what she was going to do. She said she would see if I needed a root canal for next time. I kept asking her to stop, saying it didn’t feel right. But she assured me everything was fine, so I let her continue. I gripped the poor nurse’s hand as the pain, and my shaking got worse and worse.
When the procedure finished, I felt an unbelievable searing pain on one side of my mouth. My hands were still shaking as she asked to speak to me in private. As I held my mouth, she told me that she had a confession to make. She’d given me a root canal without telling me.
A failure to take anxiety seriously
In a haze of pain and confusion, I signed my consent and got told I would need to pay a lump sum before I left. I was unemployed at the time. To make matters worse, they told me to come back twice more to finish the procedure. Due to my anxiety, they said I would have to have the treatment at a hospital under sedation. The dentist completed my referral and told me to call back in a week.
Every time I called, they told me they hadn’t heard anything from the hospital. Weeks went by, and I was in constant severe pain.
After countless phone calls and cries of agony, the receptionist finally gave me the referral number. I contacted the hospital and got told that they cancelled the referral two months ago - a week after my first appointment.
The referral team had decided my severe anxiety and shaking were not enough to warrant sedation. I later found out they didn’t even read the full referral and rejected it as soon as they saw the word anxiety. The dentist hadn’t bothered to follow up to explain my situation.
My experience left me feeling defeated and unseen
Exhausted and fuming, I went back to the dentist and complained. I was seen immediately this time. To add to the ordeal, they told me the original procedure wasn't carried out correctly. They told me I should have come back sooner.
I had to have further procedures as a result, which were painful, costly and also meant I needed more time off work. Thankfully my work was understanding, but I felt so defeated afterwards.
I already have a severe chronic pain condition that is completely debilitating. My anxiety was through the roof, and I felt like I was not treated correctly. I was given an operation without my permission. I was then in intense pain, and my referral was cancelled because anxiety wasn’t seen as a good enough condition. I was very close to getting a lawyer for general malpractice, but I couldn’t afford it.
Non-visible disabilities are not treated seriously
The whole experience made me realise that non-visible disabilities are not always treated seriously. When it comes to ensuring services are truly accessible, proper training and understanding of disabilities and health conditions needs to be a part of that.
I want to raise awareness to health professionals to understand the legitimacy of chronic and invisible disabilities and the support that should be provided for us. Don’t dismiss us because you can’t see it.