It pains me (ha! Get it?) to admit that I am in the midst of a Crohn’s flare. If the increased pain and nausea weren’t a dead giveaway, the swollen ankles and wearing a sweater on a day that was 30 degrees (that’s high 80s for you Yanks) make it kind of hard to ignore.
I really am not shocked. I suspected something was up when I realized I was blowing through my faced with the difficult decision of whether I could go without my meds or whether I should risk supplementing my prescription just this once with herb bought illegally. Of course with the Colorado trip having drained us financially, I may well face that decision anyway this month. If you are willing to donate a little extra this month to our paypal, we would be extremely grateful. Or get something from my Etsy store! Yes, it is that kind of month. Please consider helping.
For most people, the decision of whether or not to go to the hospital is a relatively easy one. You are in pain, your leg is broken, the division between “well” and “need assistance” is clear. Yes, there may be some vacillating when you are sick, but the idea is still, there is a clear sign when something is wrong.
For people with living with chronic illness, it can be hard to tell when you are just experiencing worse symptoms or when you need hospital assistance.
And so you go into this pre-hospital limbo, weighing whether or not you are ok or whether it is serious enough to go in. Living with Crohn’s, the distressing becomes mundane. Pain? A daily occurrence. Right now it is still responding to medication, though it requires more than usual. Nausea? Still normal, and if you as long as you are managing to keep most of your food down, not that bad?
Even the more serious symptoms, like finding blood in the toilet, are not really abnormal. If I went to the hospital everything it happened, I wouldn’t never be taken seriously again.
So there is a metric. Is it bad enough? Is the nausea causing me to be malnourished? Is my iron dangerously low, or just low? Am I dehydrated? It’s a delicate balance and you still don’t always get it right. Sometimes you wait too long and you end up needing more help than you otherwise would have. Sometimes you go a little too early, and then when you do need help they don’t take you as seriously.
Common sense says that if you are considering whether or not you should be going to the hospital, something serious is going on. And I live in Canada, so it’s not like I have to avoid the hospital on the basis of money. So why not just go to the hospital?
The truth is that every trip to the hospital is a risk, on many different levels.
Sick people go to hospitals, which greatly increases my exposure to viruses and bacteria. As someone with a compromised immune system, higher exposure means a greater chance of getting sick. Till now that’s mostly meant having a cold or the flu, but the risk of something more serious is not negligible.
Despite the real risk of infection however, the bigger issue is that going is stressful and increases the likelihood that I won’t be taken seriously when something is seriously wrong. Trips to the hospital are often taxing in and of themselves. A trip means having to spend hours sitting in uncomfortable positions without ease of access to your medication, while waiting to see a doctor. When the doctor shows up, you have no warning of whether you are going to get the reasoned professional who takes you seriously, the overconfident resident who doesn’t bother listening since he knows everything, or the overworked veteran who can’t tell the difference anymore between who is legitimately sick and who is lying.
This bingo means that on any given trip I don’t know if I will be taken seriously, shamed, accused of drug-seeking or other destructive behaviour. You especially don’t want to get mistaken for a hypochondriac or Munchausen’s patient.
For all that doctors know that chronic illness can lead to frequent hospitalization and need for medical treatment, that knowledge somehow doesn’t inform their biases.
I suspect that it has to do with the fact that most doctors are not themselves sufferers of chronic pain and illness. To them the decision of whether or not to go to the hospital appears clear cut, so it is difficult to understand why someone would come in when they don’t need intervention. What they don’t factor in is the fact that a dangerous situation and a regular one can look the same from the outside.
I write this after spending my night in the ER. I am back home.
I made the decision to go in after a casual joke about my inability to keep warm sparked concern from those who heard it. Imagine a hot muggy humid day, where all you want is to sit in the AC with a cold drink. Now imagine that while everyone else is experiencing that day, you are bundled in sweatpants, a sweater, and fuzzy socks, eagerly eating hot soup. You can’t get warm while everyone else is struggling to stay cool.
There are three things that can cause you to feel cold on a day like that: a fever, low iron, or low nutrients due to starvation or lack of digestion. Usually when I’m not digesting food, it is because I have been flaring enough to be bringing up most of what I eat. That was not the case this time. I certainly don’t have a fever. This means that either my gut was so swollen as to be completely failing to absorb nutrients, or I was bleeding more than I knew and my iron was low.
Either could be dangerous on its own, but low iron meant that I needed medical intervention. But how to know which one it was? The only way was to get a blood test, and the main way to do that and get the results while they were still meaningful was to go to the hospital.
So here I was in Hospital Limbo. Where I can only know whether something is serious enough for me to go to the hospital, but going to the hospital. If I was in trouble, then I would have made the right call, but if I was fine, I just used up some of my hospital “not-faking it” credibility. And how do I explain that to the triage nurse: “Hi I’m here because I’m really cold even though it is really hot and so there might be something seriously wrong, or it might just be a not unexpected side-effect of this chronic condition that we already know I have.”
It went relatively fine this time, though finding out that it was just my Crohn’s making me not digest properly took approximately 9 hours. It would have been more, but I managed to convince the nurse that he should take my blood now so the tests had time to get done, rather than making me wait for hours after seeing the doctor.
But I don’t know how this will affect me in the future. I don’t know if this trip will be used to justify a doctor’s assertion that I’m a drug seeker. I don’t know if this will mean that if this flare gets worse and I do end up in the hospital again, that I don’t get taken seriously because “you were just here and you were fine then so you must be fine now.” Because I live in a world where being in the midst of a flare serious enough that I am not digesting enough food for my body to have the energy to heat itself is “being fine”.
And so still I exist in Hospital Limbo with all the other unbaptised chronically ill people.