Why I Don't Want To Be Exposed To Your Acute Illnesses

I’ve spent much of the last 8 years in 'the land of the sick.' 8 years ago is when I started having chronic illness symptoms that greatly impacted my day to day life (though I had some symptoms dating back many years before that). Since then I have spent a lot of time cultivating a community of like minded people, many of them with chronic illnesses of their own. Because of this I think I’ve been a bit sheltered from certain world views, particularly around acute illnesses. In the chronic illness community most of us understand that an acute illness can be a really big deal. When we do get sick we stay home, we do everything we can to avoid getting anyone else sick. I had forgotten that there is a whole word of people out there who do not understand that, so for my healthy friends and acquaintances let me explain.

When I first became sick with IBS it started with a virus that I never fully recovered from. I remember my primary care doctor asking me about two months later, “Have you felt good since you got sick?” and I hadn’t. That virus didn’t cause my IBS but it does seem to have set it off for some reason. There is a whole genre of chronic illnesses called ‘post-infectious.’

Fast forward a few years and I became sick with C-Diff followed quickly by Salmonella. Normally Salmonella isn’t a huge deal for a young adult. Most people would be sick for a few days and recover fine. But because I had just had C-Diff and my gut bacteria was still pretty out of whack the Salmonella was able to take hold and it became a major infection. I was extremely ill for 2 weeks, even being hospitalized for a night. It took another full week to ease back into eating food again, a stage of recovery that would take a healthy person about 2 days. Following those two major infections I started having what I eventually learned was POTS symptoms.

POTS is not caused by C-Diff or Salmonella but there are a subset of patients who experience an onset of POTS after infections. This is referred to as Post-Infectious POTS. I have had some POTS symptoms since I was a teenager but it only started to impact my day to day activities after these major infections. There are a few theories as to why this could have happened. First is that POTS may be an autoimmune disease. This is the direction that a lot of POTS research has been going in, trying to understand the autoimmune link. The other idea is that I simply got very deconditioned during this time period and that was what caused the POTS to flair up.

It’s estimated that 50% of Post-Infectious POTS patients can regain a normal level of activity with reasonable modifications (medications, compression, extra salt, etc…) in 2-5 years post infection. I am at year 4. I have seen improvement every year but I’m not quite back to normal levels of activity. I am able to do most of the things I want to do most in my personal life but only if I work less than 15 hours a week. Definite improvement but not back to normal yet. Here’s the catch though, another major infection could set me back another 2-5 years.

Back to the C-Diff infection. For those that are unfamiliar with C-Diff, it is the primary cause of post-antibiotic diarrhea. It’s one of those infections that can kill a lot of people in a hospital or nursing home setting but for a young adult the prognosis is much better. How it works is it forms spores which can survive a course of antibiotics. Those antibiotics kill off much of the other bacteria in your gut and then, after the course of antibiotics is done, the C-Diff can emerge and have free reign. It then starts to produce toxins which cause diarrhea and if left unchecked will eventually perforate your colon (essentially it can eat a hole in the wall of your colon). Once a person has had a C-Diff infection they are more likely to have problems with it in the future and are therefore advised to avoid antibiotics as much as possible.

That means that for me, an acute illness that would be easily solved with a course of antibiotics for a healthy person is not so simple. Either I would have to suffer through until my immune system fights off the illness, which takes much longer than antibiotics, or I would have to take the antibiotics and face the potential for another C-Diff infection. If I did get a C-Diff infection I might need a very strong medication to get it under control that has a copay of about $800 on my current insurance. That medication may or may not work to get the C-Diff under control but let’s say it did work on the first try. I would still have several months (at least) where I would be more susceptible to other acute illnesses due to my messed up microbiome, which forms a surprisingly large part of a person's immune system.

These are just a few examples from my life of how an infection can impact my health for years or even the rest of my life. Of course I have also had infections that stayed acute in nature but ask yourself: if you could potentially be sick for years over a simple infection that most people would recover from in a matter of days, would you want to be exposed to acute illnesses? My friends have been incredibly understanding about this and have stayed home when they are sick or warned me so I can stay home. When the cost could be so high for me it’s not unreasonable to want to avoid exposure wherever I can. In fact it’s prudent.