Suffering from any kind of auto-immune disorder creates many complications, one of which is the notion of visiting the Emergency Department. The truth is, there are many times where the pain, or nausea, or vomiting, or other symptoms are absolutely too much to handle. Now, because some of these symptoms are not always life-threatening, most auto-immune patients are encouraged to stay at home whenever possible.
For 16 years I have been taught to avoid the Emergency Department at all costs. I have been yelled at, reprimanded, scolded, patronized, and even essentially chased out of emergency room departments. What is the most difficult about this is that I only go into the ER if I truly believe that something is terribly wrong - if I cannot get a handle on severe symptoms or if I feel it is far beyond my home treatment. Still, I am taught to suck it up and tough it out at home. For hours and hours, even days or WEEKS in some severe cases.
Of course, with that said, I have had some very positive experiences in the ER (as positive as a trip to Emergency can be) where I am taken seriously and treated like a human being who is scared and beyond uncomfortable and fearing for her life.
But here's the thing -
I have (more recently) been diagnosed with a disease called Hereditary Angioedema. The most important part of this disease is that when I experience symptoms of an 'episode' it is actually CRUCIAL for me to go into the Emergency Department or an HAE clinic for treatment. The clinic, like most offices, is only open Monday through Friday from 9am-5pm, so any episode occurring outside of those times requires a trip to the ER.
Since April, I have had 14 of these episodes, some worse than others, but NONE during clinic hours.
Before the episode begins, I always know that if one occurs, that I need to go to the hospital... And after they occur, I always kick myself for not going... but when I am actually experiencing the episode, all I want to do is lie in my OWN bed, or my OWN bathroom floor, puke in my OWN toilet, use my OWN washroom, and do everything I can to tough it out at home - the way I have been taught to for the past 16 years.
So when I saw my HAE specialist, she was (understandably) upset with me. I felt like I was in the Principal's office being reprimanded for doing something that has been virtually beaten into me for years and years and years.
This is a brand new learning curve and I am going to HAVE to make some changes.
But how do you go from being treated as a complete nuisance - from being told that I should never visit an emergency room - to then be told to FREQUENT the ER. That I HAVE to be there? And how do I know that I will be treated any better? How do I know they are not just going to tell me that I am overreacting and then send me home?
Plus, one of the most frustrating parts of this is that these episodes are not new. The actual episodes and symptoms have been occurring for the last 16 years... we just didn't have a diagnosis for it. So I have been chased out of emergency for these exact episodes before, so it is terrifying to me to start going in on a regular basis for episodes that are not anything new...
I guess we will find out soon enough!