The tagline to this blog, and the title of this post – “The Chronic Truth, Invisible Pain & Quiet Strength” – explains everything you need to know about Dysautonomia, and other invisible diseases. It is a simple way of sharing a complicated story about a really complex lifestyle.
It’s a humbling thing – admitting that there’s something in you that is broken, disabling the most basic functions of your own body – and I have always been too proud. The funny thing is, there’s nothing I can really do to protect my pride, because whether I verbalize it or not, it’s still there; it’s still restraining me and keeping me from the active lifestyle I would like to live. It’s the chronic truth.
Chronic, as described by Merriam-Webster means “marked by long duration or frequent recurrence” or “always present or encountered,” or, my favorite, “being habitually so.” There’s a lot of truths that I like to deny about my life with Dysautonomia. I like to deny that I can’t run around like I use to, that I cannot work as hard or as long as I use to, that I can’t think as clearly as I use to, that I have a lower quality of life, that I struggled to rebuild my identity every time I got worse and had to adjust my life to fit my disease, that waking up every morning is an uphill battle, that it hurts an immeasurable amount just to wear a pair of jeans; but deny it as I may, the chronic – the always present and habitually so – truth of the matter is, that it’s still there.
The invisible pain portion of the tagline is somewhat self-explanatory, in that, Dysautonomia is what they call an “invisible disease.” I have no scars or visible wounds, but the pain is still unrelenting. There is, however, another meaning.
The tricky thing about chronic pain diseases is that they take over your life. In many cases, a disease like Dysautonomia appears in the onset of puberty, though sometimes it is much later. Because it does come on in a whirlwind, your life changes drastically and sometimes instantaneously. It is hard to cope with the loss of self you experience during this time. Many will experience this more than once, as you are always adjusting your life to what you are able to manage physically as your disease progresses.
According to my old friend, Merriam-Webster, the definition of invisible is “incapable by nature of being seen.” That’s obvious. We all understand that. However, if you keep reading, you’ll see the definition listed under 3b; “not reflected in statistics.” I like this definition for my description because in the “statistics” of invisible diseases, the amount of patients that report a loss of self or a sense of depression are not reflected. Recorded or not, however, the pain and struggle of losing yourself is very real.
Now, I am sure you do not need me to tell you how Merriam-Webster defines the word “quiet.” So, I’m going to tell you how the Oxford Dictionary defines it, instead! (You love me, right?!) The Oxford Dictionary defines quiet in this way: “Carried out discreetly, secretly, or with moderation.” Living with an invisible disease means that most of your strength is also invisible. If you can’t see when I’m hurting, you also can’t see when I’m fighting it. The strength of Dysautonomia, Fibromyalgia, and MS patients is mostly carried out discreetly. That doesn’t mean we don’t say “ow,” or cry or ever show our pain, it just means you can’t always recognize when we’re being the strongest. That is quiet strength.