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When Bad Experiences in the ER Make You Fearful of Seeking Treatment

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Let me start by saying that in general, I’m not a person who finds herself afraid of many things. However, for the past year or so, I’ve begun to be anxious, worried and downright scared of one particular thing – seeking medical attention!

I have an entire smorgasbord of chronic illnesses – Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, Crohn’s disease, endometriosis, diabetes and asthma, to name but a few. I’ve had issues with Emergency Medical Services due to Ehlers-Danlos and POTS, and this seems to have now bled over into worry, anxiety and stress whenever any of my conditions flare up. I have sat for days weighing the pros and cons of obtaining medical assistance, whilst trying my absolute best to deal with symptoms at home myself. I would rather do anything than attend the Accident and Emergency (A&E) Department or request an emergency doctor appointment just to be told to come back in a week if my condition doesn’t improve!

I’m currently dealing with quite a severe flare-up of Crohn’s disease. I’m already on corticosteroids which would normally calm down any inflammation in my bowel, but this time they just don’t seem to be doing the trick. I’ve been in a flare to one degree or another for around two weeks now, though I’ve been getting much, much worse in the past five days. Yet still I sit at home trying to deal with the really unpleasant symptoms by trying home remedies such as clean eating, avoiding certain foods, trying new medications and giving my poor bowel a rest – all to no avail.

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In my heart I know I really need to be seen by a GI, but that means admittance to the hospital via A&E and my head, which isn’t exactly thinking clearly, is being stubborn and refusing to admit I need urgent assistance. I’ve tried to convince myself and my family that it’s probably just a bit of a bug, that it’s not as bad as it seems… I can see the look in my partner’s eyes when he hears me crying on the toilet for the seventh night in a row. Yet still I stubbornly refuse to go get some help.

As I’m sitting here, yet again in pain after eating, I’m getting the familiar stomach cramps and nausea and know that within the next hour or so, I will be on the toilet in absolute agony. But I also know that the last thing I want to do a week before Christmas is be admitted to the hospital. So what options are left to me? I seem to be developing some kind of post-traumatic stress concerned with hospitals, especially when it comes to emergency care – so do I risk being admitted, potentially over Christmas, or being sent home again to deal with it on my own, or worse, having my symptoms and pain dismissed? Or do I try and ride out the storm of this flare-up, hoping and crossing my fingers it will calm down on its own? There are no easy answers – and I know many, many people out there with chronic illness experience this issue day in and day out.

If you broke your arm or your leg, you wouldn’t hesitate to go to an emergency department, yet when people like me with chronic illness desperately need medical assistance, we sit and mull over the consequences. We lie to ourselves that it really isn’t that bad after all and we tell ourselves it isn’t really an emergency, so we can’t possibly go to A&E with the crippling stomach pains, vomiting and unrelenting chills. Yet if a person without a diagnosis experienced these symptoms, they wouldn’t think twice about getting themselves checked out – so why do we put ourselves through this self-doubt? And more importantly, why do so many medical professionals treat these two distinct groups of patients so very differently?

If my partner was having the same symptoms I’ve been experiencing for the past week, he would have been in A&E and probably admitted for tests, pain relief, etc. three days ago – yet I fear I would be dismissed, ignored, berated and have to legitimize my attendance in the emergency department.

I personally think it stems from the many, many times I have been doubted in A&E, called a hypochondriac by doctors and specialists, been dismissed by paramedics and GPs… It all takes a toll on your mental well-being and leads you to doubt your own body. The danger here is that we ignore that one symptom that may prove fatal or we don’t seek the help we need to prevent an even worse deterioration in our health. But while those with chronic illness and invisible disabilities are still treated so appallingly by the medical profession, the very real risk remains that people who really should be seeking urgent treatment will wait and wait and wait… and they may very well wait until it’s too late.

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Originally published: December 14, 2016
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