Living with life threatening symptoms

“Its just a few hives” I tell myself as I suddenly become keenly aware of the raised splotches on my arm. “I just ate something wrong” as the nausea intensifies. “ The air is just super dry” I try to reassure those around me as my lungs start to feel tight. 

Meanwhile my brain begins to race… “Is it really? Or am I slipping into anaphylaxis again?” As I take the rescue meds I start having flashbacks to the episodes past. In a few minutes I’ll know for sure if my body is once again betraying me or if it really is just some minor symptoms. 

I often hesitate to put that epi pen in, because once I do I know the next several days are going to be spent reliving the same nightmare. 

First the paramedics will show up. They know our address by heart and I won’t have to say a word on what's going on, because they’ll already be drawing up the epi. At the ER the nurses' faces will show they remember me and there is a good chance the doctor will too. After meds and IVs the ICU will soon be called. One of the ICU docs will walk in and with empathy say something like “Same thing?” to which I will shake my head. They’ll review the typical treatment plan and soon I’ll spend a few days in the ICU waiting for my body to calm down. Symptoms won’t be gone when I go home, they just won’t be life threatening.

Over the weeks to come symptoms will come and go. I’ll try deep breathing and distracting, benadryl and nebulizers, and I will do whatever I can to avoid the ER. But when anaphylaxis truly hits nothing I do will stop it besides epi and the cycle will continue.

Those with chronic illness often wait out life threatening symptoms. This occurs for several reasons.

1. It can be super hard to distinguish between daily symptoms and life threatening. We live with symptoms that send people to the ER everyday.

2. We worry about the care we will receive at the ER or hospital. When you are chronically ill, especially with a rare disease it can be easy for symptoms to be dismissed. We hate having to fight for appropriate care and even the thought of it can make us want to avoid going in.

3. We know first hand how traumatic a hospital stay can be and don’t want to relive it.

If you work in a hospital here is the best way you can help the chronically ill find the hospital a safe place when life threatening symptoms do occur.

1. Treat them with respect and understanding. Instead of jumping to conclusions, start by believing the patient. They are experts on their condition, listen to them. Use your medical judgment to work with them, not against them.

2. If you see a frequent flyer, greet them with compassion not eye rolls. They don’t want to be there. Having even one nurse or doctor who goes “ I am so sorry you are back but we are going to take good care of you” can make a huge difference.  

Living with a disease that can turn life threatening at any moment can be terrifying. I believe it is important that hospitals learn to work well with these patients. To create a safe place where the mental load of living with a life threatening condition is acknowledged but not blamed for symptoms. Where patients don’t hesitate to come in, because they know they will be taken seriously and not have to fight for the care they need. 

Disclaimer-

All information provided on this blog is for educational purposes only. Always consult your healthcare provider and/or your insurance provider for your specific situation. This blog does not offer medical advice.