My Lose-Lose Scenario

One of the challenging aspects of having a chronic illness is the tight rein you have to keep on things. While some people may be able to get away with certain things, I can’t. I need to be careful with most of what I do and try to remain neutral, not straying too far out of the bounds of my health.

So I recently screwed up. I was careless in lab and burnt myself.

The offending culprit right after my act of lab-stupidity.

The offending culprit right after my act of lab-stupidity.

Luckily, by now, I know that “healing” isn’t my strong suit. So I put a ton of neosporin on right after I burnt myself. Covered it the next day at work with a band-aid and added even more neosporin. I thought I was doing good…

A now infected burn. Lovely. Fan-freaking-tastic.

A now infected burn. Lovely. Fan-freaking-tastic.

So when the first round of at home treatment doesn’t work, I move on to the second round: Hydrogen peroxide. It’s my secret weapon. I’m really hoping it works. I would feel incredibly stupid for having done this to myself if I end up needing to go to the doctor.

But, you see, that’s the main problem. Whenever I stray from my limits and end up doing something that harms me, I feel stupid. I feel stupid for cutting myself, missing a doctor appointment, eating poorly, not getting enough sleep, not exercising properly (either too much or too little)…etc. Now, if you noticed, those are things that most people mess up with or do on a daily basis. But for most people, the consequences are less dire. A burn, like mine, on anyone else would probably have healed just fine without getting infected. But because the consequences are more dire for me, I punish myself for slipping up more so than most people would.

I’ve created a lose-lose scenario for myself.

Either I have no maneuverability in my life, or I call myself stupid.

So I’m going to start punishing myself less for making mistakes. I am going to stop thinking less of myself for doing a stupid thing when my progressing illness decided to raise the stakes on me without letting me know. I’ll just take care of the problem and try to do better next time.

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5 Realities of Living With a Chronic Illness

Don’t hate me for being one of “those people” but I’m going to jump on the “The Fault In Our Stars” bandwagon here. I know that many people have fallen in love with this book/movie and that even if they can’t relate as well with the characters, they can live through their stories and appreciate it. After all, who doesn’t love a good “sick person” story every now and then? And there certainly has been an increasing number of them coming out lately (personally, I want to watch Red Band Society). They make good stories after all. As long as the average person can put it down or turn it off at the end of the day and return to normal daily life.

For me, however, these stories tend to really hit home. There are so many messages in it that the chronic illness community has been trying to espouse for years now:

  1. We are NOT inspirations for the simple fact that we EXIST. This is the basic function of life. Existing. You might as well find a virus inspirational. After all, they exist without even being alive. Now that’s talent! Seriously though, just because life happened to give me a different challenge than it gave you, and just because you can’t imagine yourself with my particular challenge, does NOT mean that I am inspirational for dealing with it.
  2. We ARE excluded. We are looked at strangely. We are avoided. We are talked around. We are talked about. We are so many things that you THINK we don’t know about. I know why the elderly couple in the waiting room keeps glancing at the strange 20- something young adult and whispering in hushed tones. I know why I’m given the shocked looks when the nurse calls my name and I actually stand up and follow her. I know that my co-workers talk behind my back about all my call-offs and doctor appointments. I know what that worried glance means when I’m sitting or laying on the floor in a public place. As if you’ll actually be required to step in and do something. And how distinctly uncomfortable my pain is to you.
  3. Are we worth it? This is a thought that often runs through our minds every day, multiple times a day. “Great, he has this sick pathetic person as a mate. He must hate what I have become. I am such a burden.” How can we not think that? Doctor appointments aren’t fun. Would you want to go to them weekly? We don’t. We certainly worry that our friends and families don’t either. I go through phases where I just want to hole up and hide. Don’t look at me. I’m shameful. I want to be sick in private. It’s my own personal shame that others shouldn’t be subjected to.
  4. There is pain. There is always pain. I may look at you and say I am feeling fine and dandy and that today is a perfect day…but… that is only because I am referencing it to another day that wasn’t as fine or dandy. A day that was hell and that makes this day look like a warm cheery bonfire. My scales are different from another person’s. If you lived in pain every day, you would start rating a normal 2-3 as a 0 or 1. After all this is the baseline. This is the normal. Also, this goes back to #3. If we are feeling particularly insecure about our illness, we will hide how it affects us.
  5. There is fear. There is always fear. Chronic illnesses are uncharted territories. There is no easy guaranteed course that our disease will take. There is no promises that once A happens, it will lead to B, then C is next…etc. All there is, is a big huge UNKNOWN. And that is freaking terrifying. Many people try to comfort us by saying crap like “well I could get hit by a bus any day” or “We’re all dying”. It. Is. Not. The. Same. I’m facing dying by a lingering possibly progressive, painful disease. I’ll take the bus next life-time.

There is so much involved in being sick and the longer you’re sick, the more there is to deal with. Living with a chronic illness has a huge learning curve and there is a lot to get used to. Often times you are faced with the choice of not telling anyone that you are sick, in order to be treated normally, or telling people and then living with the stigma of “being sick”. That’s not an easy decision to make.

Weight-Loss

Weight-loss is a tricky sticky subject. Everyone wants to lose weight until you don’t. And at that point, you really don’t. Heaven forbid that you’re still losing weight though because then all the walls tumble down and open up allowing anyone and everyone to judge you for something.

“You’re actually upset that you’re losing weight?! I’d be grateful!”

“Who complains about losing weight? You’re not even that skinny!”

“You can afford to lose the weight…”

You’re too skinny! Put some weight on!”

“Just eat more!”

“Do you have an eating disorder??”

There is no end to the judgement that pours in when any topic about weight-loss comes up. This is a HUGE reason behind why I’ve let my latest symptom just sort of blow over. In the past few months I’ve lost around 10% of my weight. I was hesitant to say anything because 1) I still weight a normal amount (121lbs), 2) I didn’t want to be accused of an eating disorder (seriously, I’ve been obsessed with eating MORE calories just to counteract any future accusations), and 3) I really really don’t want to hear that I should be grateful or that others are jealous or that I should eat more (Really!? Because I am too STUPID to think “Hey, I’m losing weight…maybe I should eat more! Brilliant!”). 

So completely stupid “eat more” comments aside… it’s horrible that someone can feel scared and vulnerable enough to admit that they are unintentionally losing weight (fully knowing that this is a very weight-loss geared society) and they are told to be grateful. Grateful for what?? Imagine all the possible reasons for losing weight without trying when normally it is so difficult to do. They aren’t pretty thoughts: malabsorption, GI obstruction, organ failure, cancer…etc. The idea that the weight-loss could be due to any one of those reasons is TERRIFYING. And then with any new horrifying thing the question always comes up.. “what will happen to me?” Worst case scenarios run rampant through the mind and they’re hard to tame.

So I’m scared. I have seen others with my disorder go through this sort of thing. I’ve seen how they eventually move to a fully fluid diet. And when that fails I’ve seen them get feeding tubes through the nose or directly into the stomach. And when that fails I’ve seen them go to total parental nutrition. All of this is an extremely rare complication of Ehlers Danlos but it happens. It also happens in mitochondrial disorders or metabolic disorders. Or maybe I won the lottery and have a whole new different possibility to deal with. Or it may be nothing. But a 10% weight-loss is a LOT when I’ve done absolutely nothing to provoke/earn it and haven’t weighed this little for years..