I am not the type of person that people would consider Has a Way with Words (creating a blog doesn’t prove that…anyone can blog). And for that, I pre-apologize if any of these Truths are stated too frankly. But, quite frankly, it’s the Truth about chronic illness that makes living with it so daunting and …a downright Struggle. And I’ve been sick for third of my life now so it’s these Truths that I have had to come to grip with in order to keep my sanity and move towards the grand Acceptance (hate her, by the way. she’s honest in a scary way).

But don’t fret. Nothing here is anything more than what you already Know….even if you didn’t know you knew it. Comment your thoughts on these 5 Uncomfortable Truth below.

1. THE MEDICAL SYSTEM ISN’T DESIGNED FOR THE CHRONICALLY ILL

Living in illness is a very new phase of science. It’s new ya’ll. We are a part of the Experiment. Back even 100 years ago, I know I’d likely be dead or on my way to dying with the myriad of health issues I have.

Gosh when I think of it, if the number of infections I got as a kid that required antibiotics didn’t take me out, then the giant 2.5 liter cyst in my abdomen at age 16 would have. I know you probably have That Age, too.

Because of this reality, I know we are all grateful for the life preserving measures the medical system has created. HOWEVER, I used to get my hopes up for a cure. For a permanent fix. To return to someone I used to be. I believed with all my might if I just went to the Right Doctor, I could go hiking again. I could drive to Texas if I wanted to. I could be myself in the way I knew me to be. I believed the medical system would make that happen.

But, they won’t.

Or more so, they can’t.

They’re not equipped in their procedures and protocols to really save lives of those with chronic illness because living ill chronically is a new science.

2. The Illness Becomes the Center of all Your Decisions

I used to be a big dreamer. Were you? Were we all? I had big dreams for traveling, for having a big family, for having a medical career – I was so excited for my future!

But I don’t dream anymore.

Every decision I make throughout the day is weighed with extensive pros and cons that would make the most skilled over-thinker look like a novice. I cannot walk, eat, hang out, do chores, go grocery shopping, and all the other normal life stuff without really weighing my health against the cost.

If I have plans with friends in the evening (that I really really hope I can make it to), it entirely shifts all the other decisions I make throughout the day. Legitimately, if I have plans in the evening, I cannot go on a walk that day, I can only do a couple of light chores, grocery shopping is a no, I have to eat just right so I don’t end up with a histamine reaction that ruins me, I have to look at the weather for any potential barometric changes so I can pace myself even more if I need to, I cannot drive too far throughout the day because it’ll wear me out….the list goes on! In order to avoid any flare ups with my health, I have to live life carefully.

So no, I don’t dream of big plans or extravagant excursions (which is my flavor…I have hard time being the person who loves slow living). Dreams just make me sad. I live very acutely to my reality so I can string together more good days and enjoy the good things my little life has to offer.

3. Betrayal is a Common Emotion

I can’t tell you the number of times I’m eating perfectly, sleeping well, balancing my days, taking all my vitamins, resting periodically, etc. and out of nowhere my body will attempt to “pull-the-plug”. I’ve been chronically ill for 10 years now and honestly at this point my body really does feel like another person that I have to deal with.

I feel separated from my skin. I feel like I have to be separated from it in order to mentally survive the pain I am often in. This may sound strange, but when I regard my skin as Something separate from Who I Am, it helps me give it the care it needs. Well, to a point that is.

Unfortunately I’m an impatient person and when my body begins to drag on in its recovery, then I have a strong desire to neglect its needs. It all comes back to this idea of betrayal because why should I care for something that quits working properly even if I’m giving it all the necessities for success.

I’m in a toxic relationship with my skin. I’ll admit it.

Maybe my skin is a narcissist because even if I give it everything it needs and wants, it doesn’t seem to matter. Its favorite game is to make me beg for good health. To make me move reeeal slow just for manipulative funsies.

Don’t worry, I know how bad this sounds. I’ll talk to my therapist about it.

4. The Squeakiest Wheel Gets the Grease

I’m about to confess a deep dark secret.

I have…several times….done the exact thing that makes me worse right before an appointment so the doctors take me more seriously. Have you done that? I feel a bit ashamed to admit it, but not ashamed enough to quit doing it.

I’m not constantly impaired, but I am impaired quit often. If I step barely out of line, if I forget to listen to my body even for a moment in a day, I’m screwed! And I don’t want to live like that forever if there is something the doctor can provide to help me. So, I make my symptoms really loud right before an appointment (which honestly, isn’t that hard) so I become a Loud Squeaky Wheel that they can’t ignore.

I mean, I can show them videos, I can give them a detailed outline of my health timeline and all of my symptoms, but nothing beats having a Dystonic Storm (the conscious seizures I have) just right there in front of them. I’m not trying to traumatize them, but I need my concerns taken seriously so I can find more answers and more help, and sometimes the only way to wake the doctor up to my case is to be…LOUD.

5. Uncertainty is Constant

The body is not a machine. I never know what kind of day, week, month or year I’m going to get. It’s quite draining because I wish I could predict what my future would look like.

I would love to make “12 Month Goals”, “5 Year Goals”, etc. I would love to make vision boards and actually achieve them.

Some people say that “the only constant in life is change” and this idea of Uncertainty being Constant is a cousin to that, but it’s not the same. Change can bring about good or bad results. Change has potential! Change is progressive and can reshape the way life is going. But the Uncertainty that comes with chronic illness is a pendulum that swings from bad to worse.

I’m not trying to be a downer, I’m trying to state the Truth. The Truth is that a “good day” is only less pain than other days. It’s not a Honest “good day”, its a “good day” through the lens of Perspective.

Uncertainty is that harrowing reality that a “good day” can go sour really quick. And that fluctuation is not the Change that life organically brings, its the Uncertainty that chronic illness does.