When I Was Labeled a 'Frequent Caller' to Emergency Services

Until 2015, I had never called an ambulance for myself — yet from December 2015 to date, I’ve lost count of the amount of times I’ve been forced to call 999. I have postural orthostatic tachycardia syndrome which causes me to faint, without warning multiple times day. I also have Ehlers-Danlos syndrome which causes me to dislocate and sublux multiple joints with very little trauma. My POTS symptoms suddenly got worse in December 15, and I was regularly falling down stairs which resulted in hip, knee and shoulder dislocations and subluxations which required me to call 999.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The first few times, the paramedics and EMTs couldn’t have been more caring and supportive, but subtly their attitudes began to change. Accusations of being a drug seeker started to be thrown my way, my family was questioned about my diagnoses (never me, I obviously couldn’t be trusted!). I began to be labeled a nuisance or frequent caller to the emergency services. My general practitioner was astounded that I was being treated worse and worse by the emergency services despite having provided medical evidence to the ambulance service on every single diagnosis and confirmation from my GP that I wasn’t a drug user, I was just experiencing excruciating, prolonged painful dislocations constantly. On one occasion, I’d fallen down stairs and had dislocated both hips and a duty station officer refused to allow the paramedic to give me anything other than Entonox and I had to be moved with no proper pain relief — all because I had called an ambulance more than six times in a two-month period.

When did people with chronic illness get labeled as liars and not to be trusted? When did the stigma of opioid addiction bleed into the care and treatment of people who experience constant pain?

I am told not to take it personally, but it’s hard not to when you’re stuck on the floor with multiple dislocations being told you’re faking injuries to obtain strong medications. How do you stop feeling persecuted and attacked in this circumstance? In my case, I’ve now had to learn to put dislocated joints back into place on my own because of the heavy emotional and mental toll this attitude has caused in me. I’ve become scared and anxious of having to seek emergency medical help. My family doesn’t understand that for me, having to call an ambulance now is a highly upsetting event. They question why I get so upset and what they perceive as stubborn about it. I read in support groups of people with Ehlers-Danlos syndrome being denied opioid medications because of the addiction epidemic, and of people dying because appropriate care and medication is being withheld for no substantial medical reason. My question is, how can this situation be allowed to continue? How can medical personnel, having taken oaths to prevent suffering, continue to treat chronic illness and chronic pain patients in this unethical, cruel way? There are problems in both the UK and US with an increase in drug addiction but when opioid painkillers are given and taken in a controlled and careful manner, research shows addiction is unlikely.

How can patients such as myself who are severely disabled with diagnosed and monitored medical conditions be expected to put up with this intolerable situation, and how can it be stopped? We need advocates in government and the NHS to speak up for us before this situation gets even worse. How many more people have to suffer before this situation is resolved? For now, I manage my issues the best way I can and I hope and pray that someone, somewhere can put a stop to this dangerous and unfair situation before it’s too late.

Lead photo by Thinkstock Images