Story: "I need to protect myself from the people who should help me"

Today's story comes from a woman who asked that it be shared anonymously.

I woke up last summer with particularly bad palpitations and a fast heart. I was also dizzy and feeling that I may pass out. I phoned the GP and they made me an appointment later that day. As the morning went on I realised I was too ill to get there. Moving at all made my heart pound and the room spin. It shouldn’t need saying but it probably does that at this point I was a picture of calm and serenity. Far from being in a panic, I was breathing really slowly and deeply to try to slow my heart. For the first time in my life I called an ambulance. Making that call was a massive deal and not something I did lightly. Paramedics did an ECG, and my pulse was 169 when they recorded it. I told them I have a leaking valve that my cardiologist had told me might require surgery and that I used to have Graves, an autoimmune disorder that affects that thyroid, but apparently now my thyroid was fine so I was on no medication. They said the ECG was normal, and I was relieved to hear that.

What I didn’t know then but do now is that I had already been assigned a Somatic Symptom Disorder woman label. At the hospital I was in a wheelchair, the paramedics showed something to the triage nurse and gave her the ECG which they said was fine. I was not even acknowledged, so without speaking to me at all, I was wheeled into the general waiting room. I felt terrible, I was still far from panicking. I continued to try to breath slowly. I was very cold and my hands were going white/blue. Still my heart raced and the room spun. I don’t know how long I sat there but every time the nurse came to call someone through I hoped she would notice I was really struggling. After what felt like ages, I asked the nurse how long I was likely to have to wait. She said there were at least 5 or 6 people before me. This was the first communication with me since my arrival. I continued to wait and feel ill, but slowly my heart began to slow down and I began to feel a bit better. At that point I became really aware of my surroundings and felt humiliated that I’d gone through this in such a public place.

People around me were speculating about what I must have done to be abandoned like this. She must be on drugs I heard one bloke say, and she probably kicked off in the ambulance. I was still very calm but very sad. I remembered I had my bag with me so decided to get a taxi and go home. I don’t know how long I’d been there at that point but I hadn’t had any examination at all, not even had my pulse taken since the paramedics did it. I doubted my ability to stand up but actually it was a lot better. So I approached the receptionist at one vacant window of several other occupied ones. I politely and quietly explained that I was feeling better now so was going to go home. The response was to shout at me. And I mean really aggressively shout at me. She said that I couldn’t just call an ambulance then walk out! This annoyed her so much that she raised her voice even further to a nurse across the waiting room who was doing side room triage, that I was threatening to leave unless I saw a doctor now. The complete injustice of this and the lie that I had been in any way threatening to anybody caused me to cry. So now I was crying in a public waiting room, completely on my own. The nurse who had been told of my threat found a doctor. I was asked into a side room. The first thing written on my notes was anxious and distressed. She looked at my ears said they were a bit red and gave me an antibiotic prescription. Didn’t take my pulse or listen to my heart.

In summary, during the whole event I was spoken to on 3 occasions
1st in response to my question. 
2nd shouted at by the receptionist.
And 3rd Your ears are a bit red.

This was at my local hospital. The Cardiologist is at a Central City hospital, when I saw him last month I asked whether he had been aware of my 999 call. He wasn’t. I found out this week that my antibodies are 240 where normal upper limit is 59 I have active autoimmune disease and thyroiditis. 

I have a contrasting story for you. Last month I got a particularly lovely new Brother in Law. He is a little younger than me and not long retired from the police. I love him to bits and am so happy for my sister. Late December 15 he started to have a rapid pulse and some shortness of breath. He is healthy tennis playing dude so this wasn’t right. He phoned his GP and was told to go down straight away. He was sent in ambulance to the same A&E as me. His ECG was normal in the ambulance but at the hospital they continued to monitor him and an irregularity was spotted. He was admitted to the Coronary Care Unit for monitoring, started on medication and booked for treatment. He had his treatment 2 weeks ago. Has made a great recovery.

What I have learnt from all of this:

1) the sexism is institutional and once a person has a somatic label attached, it is worse than a criminal record. 

2) I need to protect myself from the people who should help me.

3) One of the most destructive effects is hard to explain because it is about my nature and temperament and is so very personal. It has made me less empathetic and less able to listen to my patients or to my husband and children. I am not by nature a self-obsessive person. This label is untrue, unjust defamatory and deeply destructive to every aspect of my life. Thank you for giving me this opportunity. It's been very upsetting remembering the details but at least because of this blog I know I'm not alone with this. [Ed note: That's why we do it.]