What It’s Like

The following is a companion post to A Brief Tantrum with the theme of what it’s like to live the #CronicLife (but with no swearing this time).

I was trying to explain what it’s like to be me to my therapist when saying that I wish my providers would go the extra mile. I’ve been accused of having high expectations. I think the truth is I settle for low expectations but am angry because I know they can do more. I don’t expect anything that I believe someone isn’t able to attain. I have high expectations because I know they can be met. But again, I settle for far less than that. That’s all I get.

I’m just the bad guy for wanting more than they think they can give. They can’t see what it’s like for me though.

I know providers have a lot of patients/clients to see and manage. For me, each diagnosis I have is like having a patient by my side that never leaves. A patient that takes a lot of attention and to deal with anything for that patient it takes at least 7 phone calls, extensive research for solutions, and managing multiple people who should have some responsibility but won’t take up the mantle. Then that patient comes with complications and meds that have side effects. It can decide to scream at you day or night regardless of your schedule and you can’t hang up the phone or ask it to go elsewhere.

Now imagine that times 20 patients that are all equally fighting for attention at the same time and they never go away.

Then imagine having to manage that while feeling like you have the flu – hard to breathe, achy everywhere and hard to move, exhausted, etc.

Again realize that you can’t turn any of the patients away nor do they understand or care how you feel. In fact, the worse you feel, the more difficult they get.

Add to that every single person outside telling you it’s not enough. You’re not trying hard enough.  Your work isn’t good enough. You’re degraded and deamened at every instance. But you’re not supposed to complain.

Not to mention you aren’t getting paid for any of this. Rather these diagnoses, each a patient on its own, take away all of your money. In my case leaving you homeless and ashamed of needing to beg for help.

And finally, YOU CHOSE NONE OF IT.

My providers chose to be providers. My providers can choose to turn off their phones and leave the patient cases at the office. My providers can choose to have a life outside the office. My providers get paid for their work and hopefully come to work fairly rested or take a day off when they have the flu (at least I hope they would so as not to give their patients the flu).

I didn’t choose any of my diagnoses and I can’t turn any of them off. Diabetes may wake me up in the middle of the night with a low if nightmares don’t already. Endometriosis can decide to flare whenever it wants making me nauseous and in pain that seems blinding. The headaches are with me all day every day and get worse the more stressed I am. I have to worry about the complications of retinopathy and neuropathy plus the side effects of the 15 pills and insulin I take. To get one medication (or syringes or test steps or other medical accoutrements) filled i have to call one provider 4 times and the pharmacy 4 times. Then I have to pay a large portion of my disability to obtain these medicines that I cannot live without. And no matter how hard I try my HbA1c will never be good enough and I’ll be blamed for not trying hard enough. My mental health will drive me insane but I’ll be the one labeled difficult and rude for being frustrated. Etc. Etc. Etc.

I can’t hire a babysitter to take care of these things when I need a day off. I don’t get to do anything without considering all of my issues – do I need to take meds with me? what food and drinks will i need to pack of I go out today? what things to manage side effects? and plan for the worst case scenario. Like packing for a baby, I literally have a diaper bag full of supplies. Still I’ll come across situations where I forgot something. But the results of forgetting anything can be life threatening (like forgetting juice for a low).

The hardest part, for those dealing with 1 if these things or 20 of these things, no one can completely understand. Others might feel bad about it, but the one suffering is alone in it. No significant other willingly signs up to help. Even providers and friends with the best intentions can’t know. At the end of the day, you have to do this. No one else. You, and you alone, are responsible. People will leave and disappoint but you can’t blame them because I would too. 

BUT YOU HAVE NO CHOICE.

I HAVE NO CHOICE.

The question is, what did I do to deserve this? And why does it have to hurt so much.

Is it really to much to ask for someone to do a little more? The expectations for me to attend to my survival are overwhelmingly high. Can’t I want you to help with them?

I’m frustrated and scared managing this all and feeling like I’m failing.

Mostly I’m tired. Really tired.

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