Family Life · Trials

But You Don’t Look Sick…

“But you don’t look sick” …and if you said that to me you’d be pretty correct. I don’t (usually) look sick. But the fact of the matter is that I am.

I, like many others, suffer from what is known as an “invisible illness”. An illness or chronic disease whose side effects aren’t always visible to an outisde observer. I’ve been diagnosed with my invisible illnesses (Yes plural. I have two.) for almost ten years. That means I’ve spent close to half of my life attending frequent doctors appointments, undergoing regular medical testing, learning about my diseases, and learning how to cope with them. And that doesn’t even include the years spent trying to figure out what was wrong with my body, trying to make sense of a litany of all kinds of symptoms, and struggling to find medications and dosages that’d work to treat them.

So why do I bring this up now? Well, for three reasons.

One being that I feel like it’s important to be honest about life. So often in this world of social media we forget to show and talk about “real life”. Many of us have a penchant for only sharing the good stuff in our lives, and that’s all well and good, but not wholly real. What that leads to is really destructive comparison with other people; “oh their life is so perfect”, “their house is always so clean and tidy”, “they always have delicious-looking homemade dinners”, “their kids are so well-behaved all the time”, and on and on. But that’s not the case for anybody I know or anybody I follow. No one, not one single person, has a picture perfect life 100 percent of the time.  Often, what you don’t see, is the mess hidden just outside of the frame of that photo, the 12,000 shots it took to get that one perfect photo of the children before they erupted into tears, the cartons of takeout littering the fridge shelves. That’s life. Real, honest, messy, wonderful life. So, that’s the life I like to share; the one that’s not always pretty but is wholly me and wholly honest.

Two, on the subject of openness and honesty, is that I had a really unexpectedly scary, difficult doctor’s appointment the other week. One of my invisible illnesses has slowly, unbeknownst to me, gotten wildly out of hand in the past year. In fact, its become so severe that its morphed into its own new, separate diagnosis Myxedema. Myxedema is an advanced, severe form of hypothyroidism that can lead to coma and death if left untreated. Put simply, it can affect pretty much every body system from your brain, to your lungs, to your heart, to your eyes, and much more. Which is what it’s doing to my body. The normal TSH level of a healthy person is typically between 1 and 3 mcIU/mL (milli-international units per milliliter). Mine is at 53.4 mcIC/mL. Almost every body system of mine is currently being affected by this as evidenced by my vital signs, physical examination, and blood test results. Strangely enough, about the only thing not affected, besides my brain because it’s not at the level of being Myxedema coma, is my glucose level. My physician still doesn’t understand quite how that is possible.

Basically,

  • My heart and lungs aren’t functioning properly or at the level expected of someone my age.
  • My muscles have low reactivity
  • My joints have stiff, limited range of movement
  • My bone marrow is suppressed
  • And pretty much all other blood levels of hormones, blood cells, etc are wonky

So what does that all mean? It means that my body is pretty sick right now, and that it’s going to take about a year to a year and a half of more medications, testing, and doctors appointments every two months to get things somewhat back to normal. It also means that a lot of days I just don’t feel very good to varying degrees. Sometimes is not so bad and I can function like a normal person in their twenties. Sometimes I can function but not very well, I tire easily, or am in pain. Other times I feel really yucky and have to take time to rest and care for myself, oftentimes more than a typical person my age would. Which leads me to number three…

We often forget that the people around us may be fighting battles we know nothing about and can’t really see from the outside. This is especially true when it comes to the many individuals suffering from “invisible illnesses”. So let this serve as a good reminder of how needed and important compassion is! Lets be a little more gentler to those around us and give people the benefit of the doubt. Perhaps the reason they aren’t present, or that project isn’t done on time, or they’re late, or whatever the issue may be is, is because they feel sick even if they don’t look sick.

XOXO,

Cait

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