Sunday, June 14, 2015

Self-care Sunday: chronically bad ass patient's bill of rights


One of the things that I've always found hard about SJIA or fibro or other illnesses I have is how people can't see what I'm dealing with. It gets easy to judge me or others as abusing the system (parking, SSDI, whatever) because we're fat or lazy or whatever.

I also realize, however, that it does make me privileged. I can pass as normal, no matter how I'm feeling, and no one ever has to know. This is handy for jobs, dates, and a whole handful of things that I know I take for granted.


In doing some soul searching, I've realized that I don't utilize assistive devices as much as I should as a result of all this. If I look otherwise fabulous, I'm not going to want to show off that I'm sick. Recently, I've been working on getting over that shit. Seriously, who has time to care?

With this flare kicking my ass, I've worn just about every brace and wrap and sling I own to work or with friends or at home. I mean, I've gotten to the stage where I'm comfortable farting in front of T now. Is a shoulder sling or K-tape really going to affect what he thinks of me?


Seriously though, it's one of those things where I find myself blessed and cursed all at once. On one hand, being able to sometimes do is HUGE. On the other, validation and having people believe you that you're in pain is also huge.

Neither way is better and both have trade-offs... though there really isn't much we can do about those.

It got me thinking about how we often don't feel like we have the right to be sick. That can be from chronic issues or acute issues too - like when you hear someone say that they can't afford to get sick right now.


Sometimes that's a very literal thing and that sucks. Sometimes that means you're a mom and you don't get sick days. Sometimes that means you're chronically ill and don't have enough sick time to get normal people sick.

When you go to a hospital or clinic, sometimes you'll encounter a patient's bill of rights. That normally includes things like being heard and getting good care, etc. Today, I'm writing one for us to use for ourselves.

Here is the chronically bad ass patient's bill of rights:

  1. I have the right to be sick, whether that's acute or chronic.
  2. I have the right to get the best and most appropriate treatment for my issues. If you want to help, ask me first before you go spouting the latest diet/exercise/talk-show/starvation/self-harm/new-age/homeopathic/homoerotic/gluten-free-sex trend. Chances are I already know what I'm doing. I appreciate the sentiment, but just don't.
  3. I have the right for others to acknowledge my illness, even ask about it, as long as they realize that I am not obligated to give answers.
  4. I have the right to be heard when I'm in pain. This can mean stopping an activity that is giving me pain with no questions or going to the emergency room when I need to.
  5. I have the right to use assistive devices that help me, without being questioned about being a walking wheelchair user or being able to walk without a cane.
  6. I have the right to nap. I've spent too long trying to keep myself awake when my body needed the rest because I didn't feel as though I deserved it.
  7. I have the right to curse like a goddamned sailor. It helps with pain levels.
  8. I have the right to feel damn sexy. Sometimes that means dressing up and looking fly. Sometimes that means enjoying my body by myself or with someone else. No one gets to judge me for that.
  9. I have the right to say no to something and not feel guilty, whether that's attending an event or talking about my illness or whatever.
  10. I have the right to treat myself, even if I live on public assistance. I currently do not, but I would not deny myself the occasional Reese's PB cup because I'm getting a 'handout' if I was. (So much I could say here...)
  11. I have the right to have fun. Even if I feel like shit, having fun keeps me going. Should I be on the floor a lot? No, but crawling around after my guinea pigs keeps me young and happy and enjoying my life. Don't judge that shit.
  12. I have the right to process my illness (or any other) issues as I see fit. If I want to be dark and brooding, let me. If I want to be Pollyanna, let me. Don't judge or compare me to others. It may be easier for those who haven't been abused or in a PTSD situation to be focused on the positive because their brains aren't LITERALLY wired to think of the worst case (no I'm not fucking kidding).
  13. I have the right to be as involved in my care as I choose to be. Docs, this means you gots to get on board with us being partners in our care. You may get paid to help us, but you don't live in these fucked up bodies.
  14. I have the right to get a second opinion about my care. Don't get pissy about it.
  15. I have the right to be a person. I am a person before I am a guinea pig mother or wife or aunt or sister or patient. 

What would you add?

No comments:

Post a Comment