Chronic Illness : What I Wish Others Knew

Chronic Illness is an incredibly diverse and broad term. It’s widely used as an universal label to categorize an illness that just won’t go away (in the simplest of terms). It’s something you live with for a long time, if not the rest of your natural life. Long story short, it’s a sh*t hand to draw.

As of 2012, about half of all adults—117 million people—had one or more chronic health conditions. One in four adults had two or more chronic health conditions.

Source: CDC

What I want others to understand is how uncontrollable it can be, and how it can make the simple parts of everyday life difficult.

To define my chronic illness for you it’s: Left temporal lobe epilepsy, essential tremor, endometriosis and myoclonus. The only one that has something close to a “cure” is endometriosis, and even that may recur. I got a lot going on as you can tell, and yes the maintenance on this is a lot. I have seizures in my left temporal lobe that cause absence seizures and many other problems associated. On top of that, the seizures have done some damage in that area of my brain causing auditory processing issues. The next part is annoying, and even more debilitating than I expected; essential tremor. Some days it’s barely noticeable or my medication is working well enough for me to pass as completely normal. But, there are a lot of days that are frustrating to say the least. Myoclonus is a weird one, at first we thought it was a type of seizure I was having but after a 48 hour ambulatory EEG it showed they were a phenomenon of their own. My neurologist told me that it is an issue that can arise in people with neurological disorders. Endometriosis is something I’ve been dealing with longer than my epilepsy. I got my period when I was just 11 years old, and every period since then was horrendous. Finally, after 16 years my gynecologist gave me the surgery I needed to help this condition. It’s not a cure-all, and there is no guarantee that it won’t come back full force some day. But for now it’s a patch, and I threw in an IUD for extra help.

It’s a lot, and messy. But, nothing compared to many others.

Here is what you need to know if you don’t understand a person in your life who has a chronic illness. Problems vary.

  1. Know that just getting out of bed was a process. It’s not laziness, it’s a mix of many things. Medications are rough on the body, and a lot of times cause a grogginess that is like a fog hanging over your day. Or they can cause the opposite, which is insomnia. Or, they had a bad panic attack. OR they had a bad night of seizures, recovery is a literal pain. OR they had to show face at a party and that alone is enough to just take the wind out of you. The list goes on and on and on for this one.
    Take your pick.
  2. For many, extremely regular doctors appointments, medical tests, trips to the pharmacy and constant phone calls to insurance take up a lot of time. It could be a full-time job on it’s own. Maybe they are in a bad mood because overnight their insurance decided to not cover the cost of the medication they are on. Now they have to fork out thousands of dollars for a month of  meds that keeps them alive.
  3. “You look tired.” Cool story, bro. If you have some inkling of what your friend, co-worker or family member has, think it through. Maybe ask if you can get them a cup of tea or coffee, chat about their day, crack a joke that may cheer them up a bit. Little things matter a lot in these cases. And being there as just a fellow human with no judgment is a great gift to give. Chances are they have been told they look tired by a few people already. I like to pause awkwardly (on purpose) and then change the subject when people say this to me. It’s fun to see the flicker of panic in their face. It’s a good bit of entertainment.
  4. Cancelled plans. Don’t take it personally, conserving energy is a sacrifice. Sometimes social engagements have to be put on the back burner. We’re not flaky, we’re sick. And sick comes in many forms and intensities, everyday is different. We don’t always want to explain why we can’t come because it’s complicated. I don’t like telling people I spent the day in ER because I had a blood clot in my leg (true story), or I had a migraine so bad I couldn’t keep any food or meds down due to severe vomiting and dehydration (also true).
  5. We try, I promise. This is the most important one to understand. We really do try. Having experienced loss of whatever independence I had once; this one really hits home for me. I get a lot of people who say “we’ll at least it’s not cancer!” or “could be worse”. I find these statements help people rationalize what’s is happening and if they can make it appear better their own guilt is eased. Why they feel guilty is their issue. Yes, it could be worse, but damn it I’m trying. Save your words of inspiration for when you need them, I’ve got my own.

*PSA: your pinterest and instagram feeds that are filled with BS quotes are really depressing. Think before you post. Also, if you really read them they often don’t make sense. People do actually put out bad quotes on purpose to make people who repost them seem stupid. But at least it’s pretty to look at right?

This may seem rude, but after a while putting up with this it’s a task. And I am a person who doesn’t like to hold back. I don’t hold back because people are too frickin’ weird about this crap. I get that you’re uncomfortable and don’t know what to do, that’s why I wrote this. It’s coming from a well intentioned place in my mind categorized as “things I want to tell people”. It’s at the forefront in my brain, a lot of people suppress theirs to be polite. Good for them, they are a nicer human than me. But, I heard the stress of holding stuff inside can cause cancer.

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