When the Little Things Add Up as a Person With Multiple Conditions

This month I was due to go back to a very challenging work position. I’ve done this type of work before, but because of relative inexperience in the field, I had much less responsibility and autonomy and a minimal work load compared to others. Regardless, I loved it. I’ve thought about it every single day since I left and miss it more than I’ve ever missed any position or academic endeavor.

The other day I had an informal meeting about it all. I asked that the start date, for the end of this month, be pushed back to allow me time and space to go to all the specialist appointments I have lined up over the next few weeks and to get the infections that at the moment will just not retreat under some sort of tenuous control. This morning I got a very friendly e-mail saying the date could be pushed back within reason, and they also asked if they could have the medical reports for a health risk assessment to figure out how best to support me. All I wanted was to hide.

If you saw me walking down the street, you wouldn’t be able to tell there’s anything medically wrong with me. Even people who know the “story” tend to comment on how well I look. My list of diagnoses includes epilepsy, angioedema, a predilection towards recurrent, persistent, severe infections and a host of systemic autoimmune issues as well as a propensity for blood clots. Actually, the list gets very long and boring. What is important is that other than the occasional miracle day when I wake up to find the planets have aligned and I am feeling well, most days involve some sort of physical problem. To spice things a bit, the problems vary day to day.

Yesterday I had angioedema. I spent the day swollen beyond recognition with a blood pressure of 65/47 and was too dizzy to stand. Today I have a high temperature from an infection that is coming back for the third time in two weeks despite long-term and acute antibiotics. Three days ago, I spent the day with excruciatingly painful frozen, blue toes and burning hot and purple fingers. Four days ago, I couldn’t eat or drink because of the infections. Five days ago, my left knee gave out from an MCL tear and general connective tissue non-cooperation, and I fell down the stairs; that was before my shoulder popped out of its socket for the hundredth time. What I’m describing is actually an OK week with only minor issues, but you get the drift. Oh, and it goes on and on like that ad infinitum. Every single day. For the past 10 years.

A number of things invariably happen when one’s physical existence is attacked repeatedly on multiple fronts. People learn to live with anything their disorder throws at them and become experts at rapidly adapting their schedule and the level and/or type of activities they can do on any given day, any given hour, any given minute. This tends to be endlessly frustrating for people who are well and just cannot understand why when you look exactly the same as you did yesterday you’re now saying that you cannot possibly stand for 20 minutes today when standing for 30 minutes was OK yesterday.

What is also true is that people with chronic conditions get very good at hiding the symptoms of said conditions in front of others. As painful as the physical side of illness may be, the emotional and psychological sides are infinitely more so. And while I can’t speak for anyone else, sometimes I just want to go to work and have that just be the end of it. No adaptations, no risk assessments, no endless discussions about disability. Maybe that’s denial, but let’s not forget even that can be useful sometimes. There’s also an aspect of not wanting to make a fuss about a situation we have already figured out how to adapt to, oftentimes at a great personal cost to both survive in this world and to maintain a facade of wellness.

And of course, there’s fear. Fear of being looked at differently. Fear of losing a job or degree or interview for the thousandth time. Fear of our vulnerabilities being exposed, for all to see. And yet those fears are not unique to those of us who happen to have a chronic illness (or two!), but common among all.

Yet being consciously aware of the psychological nuances behind an emotion isn’t enough to alter it; hiding from that risk assessment and just going to work still sounds like a good idea!

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