The Anxiety of Getting Sick After Immunosuppressive Drugs
Last updated: May 2019
When I was a kid, I didn’t really get sick all that often. Well, no more than everyone else, it seemed. Like most people, I would get the occasional cold, and most years, the flu season would get me. But overall, my odds of getting sick seemed to be just the same as anyone else’s which meant I never really had any reason to give any thought to the matter. So yeah, getting sick sucked but… it happens, right? We all get sick; it’s sort of just an inconvenient part of life that we have to deal with. C’est la vie. With the exception of an awful case of mono in high school, this remained to be the norm regarding my health until I was diagnosed with multiple sclerosis (MS) at the age of 20.
The autoimmune inferno that was my immune system
Around that time, I started to notice that I wasn’t really getting sick as often, even when everyone else around me was. It got to the point where I got sick so seldom that I started to feel like my new MS immune system was a sort of bullet-proof vest that most bugs just couldn’t penetrate. Eventually, I felt like if there was a sudden outbreak of the black plague in a hospital, I could probably walk around without a mask and be just fine. Maybe this was a product of my age, but I felt untouchable when it came to getting sick. I remember thinking that my immune system was like a raging forest fire in my body that was constantly burning and destroying everything in its path regardless of whether a foreign invader (like a cold or the flu) had been detected. Sure, this constant fire was doing damage to me and my delicate nerves, but now, any bug that tried to sneak its way in would be stepping right into the autoimmune inferno that was my immune system.
Getting back on my feet
In just a few years, the arsonist known as MS would set a massive blaze that not only spread to new and previously untouched parts of my brain but also my spinal cord. I suffered what was (and still is) by far my worst relapse ever, and I spent 6 weeks in an inpatient physical rehabilitation hospital where I finally left in a wheelchair, unsure of whether I would ever even walk again. After months of hard work and trying to find a new doctor who was willing to put me on a new and stronger treatment, I was back on my feet (literally). As far as I saw it, MS had tried to take me down, and it failed; I was now feeling even more confident and indestructible, especially in the face of any illness that may be lurking among the public. That would soon change.
I was relapsing again
At the end of 2014, after almost two years of seeing pretty much no new disease activity, I started to notice some new symptoms popping up. They were relatively subtle but nonetheless, they were new, and that greatly concerned me because, in my head, that meant that something must be changing. Long story short, the treatment that had been working so well for me had basically stopped working at all and… I was relapsing again. Nothing seemed to slow this attack down, and so I was rapidly feeling worse and worse. I had no idea what to do, but then a new MS treatment was FDA approved, and my neurologist and I decided that it was my best option for ending the current assault on my central nervous system (CNS).
When I finally got sick
I was told this treatment worked by suppressing parts of my immune system, and every medical professional I talked to did a pretty good job of scaring me regarding all the different ways I could quite possibly get sick. This was probably where the seed of my anxiety of germs was planted; everything around me was trying to infect me with something that wanted to murder me! OK, maybe that isn’t exactly what people were telling me, but that’s basically what I heard. I became super germophobic and was constantly washing my hands, using hand sanitizer and spraying everything with disinfectants. Howard Hughes would be proud. I didn’t get sick for a while but when I finally did? I felt like death. I was achy, coughing, throwing up, and I had spiked a fever of about 100 degrees (Fahrenheit) which my neurologist had previously stressed meant that it was time to head straight to the E.R.
Superbug or simple cold?
I showed the nurse at the front desk the little information card I had received with my treatment for this exact situation and rather than having to sit in the waiting room, they immediately showed me to an exam room. What kind of super-death-bug of doom had I caught? In no time at all, they were running labs and taking swabs to try to find that out, and while I waited for the results, they hooked me up with some IV fluids since I was so dehydrated. It wasn’t long before the doctor was back with the results and… I was negative for everything. The doctor told me it was probably just a cold. At least I didn’t have to wait in the waiting room…
Anxiety of getting sick
All that from a cold? What happened to the sniffles? I shouldn’t be running to the ER feeling like I am about to die, I should be watching “The Price is Right” over a bowl of chicken noodle soup! That’s when I realized just how fragile my body now was. No longer did I feel untouchable; the raging fire that I once considered to be my MS immune system had apparently been extinguished allowing all those little bugs to walk right in unharmed. And just like that, my anxiety of getting sick was switched on. I now hesitated to go out in public without the protection of a medical face mask and a bottle of hand sanitizer which I now had in my pocket at all times. For the first time ever, I found myself feeling vulnerable to illness and despite all my efforts I would find myself in the ER feeling terribly sick several more times over the next 3-4 years.
If I could go back in time...
Like many disease-modifying therapies (DMTs) for MS, I have to do labs every 4 weeks. Until recently, my numbers had all remained below the range of what is considered to be “normal” which is exactly what the treatment I had done was supposed to do. That being said, if I could go back in time and stop myself from letting them pump that stuff into my vein, I would. I feel like (in my case) it did way more harm than good, but at the time of my writing this, traveling backwards in time is still not an option. Did I wreck my immune system for nothing? Would I spend the rest of my life getting sick and get nothing (regarding the management of my MS) in return?
Maintaining a more "controlled burn"
Well, according to the latest lab results I had received? No, because almost all my numbers were back up! I wasn’t exactly sure what that actually meant but evidently, something had changed. Maybe the long-term effects we were expecting to see from this treatment were not as long-term as we thought? Shortly after I got those results, everyone around me started getting sick, and of course, I started feeling like crap as well, so I braced myself for the worst but… it never came. I’m not saying I want that forest fire back in my life, but maybe with the latest treatment that I started last year, I can maintain more of a “controlled burn” and avoid getting so terribly sick so often? Time will tell, but even if that is the case, I don’t know how much time it will take for me to completely shed the anxiety of getting sick that I have acquired over recent years thanks to MS.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: