Things not to say...

I came across this list of replies to Things Not To Say To Someone With RA. It's a decent list, some not yet applicable to me because I'm so early in actual treatment of it. All the same, all of the sarcasm is priceless to me and more than a little appreciated. I am in a sort of rage about my disease right now. I'm heartily stuck in anger. The list I read isn't complete, in my opinion. It's also lacking enough curse words to properly portray the frustration of hearing this shit from people, here are my 5 additions to the list.

For reference, here is the original list: http://rawarrior.com/20-replies-to-things-not-to-say-to-a-rheumatoid-patient/

1. "You just need to smoke some weed."

Hey, listen, I get that weed can be helpful for a lot of things and may even help relieve the pain, anxiety and depression associated. But it is temporary and if we are going to find illegal temporary drugs to get that effect, why not suggest heroin or morphine? Same sentiment in my eyes. I have an auto-immune disease for which there is no cure. A joint isn't going to cure my joints. I will require hardcore meds for the rest of my life to slow down the disease in order to delay becoming disfigured, deformed, and unable to independently function. That will happen eventually anyway. More to the point, I HATE SMOKING WEED. It's not for everyone and I am not looking for an excuse to get a medical marijuana card. Liquor kills the pain too and I actually LIKE liquor. Please stop saying this to me. It makes me want to punch you in the face. Also, fuck you. 

2. "The mind is a powerful thing. Maybe you just need to change your thinking/attitude."

Ok, listen, if I could "think" my way out of this pain, I'd have done it a long time ago. On bad days, I feel like I am simultaneously walking on no less than 10 broken bones while someone is sticking knives and/or ice picks in various parts of my body and the other "better off" joints are frozen and cracking and popping like icicles when I move. AND my muscles are sore from the extra effort they are making trying to hold me up despite all that. AAAAND I have a low grade fever and that's just pissing my body off. AAAAND I generally feel like I ran a marathon with the flu. I am probably pumped full of all the meds available to me, covered in heating pads, already took 3 hot whirlpool baths, and slathered myself in whatever icy-hot-esque oils or creams I can find to distract me from the pain for a few precious minutes. When you tell me to think my way out of that and adjust my attitude, I sincerely wish the pain I'm in on you so you can try to "adjust your attitude" to get rid of it. I want to punch you in the face. Also, fuck you.

3. "Don't do that! You're going to hurt yourself. Let me do it for you."

This one is tricky for me. There are days when my pain level is baseline. Although I am literally never pain free, the miracle of this disease is that your tolerance for pain becomes superman level. So, baseline is a good day/week/month where the pain I described above isnt there and I am just in a regular amount of pain. The best way for me to try to describe the freedom of baseline is to compare it to that sort of euphoric, king of the world feeling you get when you finally feel better after having a bad flu. Your body did not, in reality, revert back to it's teenage state and you're ready to go run 5 miles but in comparison, you feel like you are experiencing the most healthy day of your life. If someone told you to slow it down or go back to bed, you'd think they were nuts. You feel great!

That's how I feel at baseline, especially after a really bad flare up. So, let me do what I want! If I want to go on a hike and carry a 20 lb backpack, carry my own tank and dive to 100 feet, help with some sort of physical labor, DANCE all night, WHATEVER... Please don't tell me not to "for my own good" or to "save me from myself!" Facing the fact that I will eventually lose my ability to do these things at all is the hardest thing I've ever had to deal with (and if you know anything about my life thus far, you know that's a significant statement). If it causes me to spend the next day or week in bed, that's my choice. I promise that my body will tell me when to stop. And I promise you it is hashtag worthit to me to climb that mountain, dig that hole, dive that depth because I STILL CAN and that ticking clock in my head is constantly reminding me of the undetermined "later" when I CAN'T. Yeah. I'm stubborn. Thank God-Or-Whoever for that. Thank God-Or-Whoever I am not giving up until I HAVE to.

When you discourage me from doing these things because it may knock me down tomorrow, I feel the love. I feel the care and concern and I do appreciate that part of it. But I still want to punch you in the face. Also, I love you. Thank you, truly, but fuck you.

4. "I am selling this supplement/shake/pill/oil/cream/drink/MLM bullshit stuff and you should try it because it will REALLY HELP! Read these testimonials."

Muderous Rage. Face punch. Fuck you. Twice.

*Please distribute that up through all the tiers so everyone can get their share.

5. "I understand."

No. You don't. Punch. Fuck you.

Exception: Some people do understand. They have some something that aids them in being able to understand the physical, emotional, spiritual, existential thing I am going through and how it all changes day to day yet is always present. Some people get it. And trust me when I say that I know the difference. If you are one of those people, this doesn't apply to you.

I want to say that I understand that almost every thing that I listed here is said to me with good intent. Most are said by people who truly want to help or at least provide me some comfort. The words are meant to elicit a positive response and eminate love in some form. They don't deserve to be punched (Except those guilty of #4, they deserve to be punched) or have an f bomb thrown at their face. It's unjustified anger; misplaced rage. The real f bombs and face punches are at the disease. But, all the same, stop saying this shit to me. It doesn't help like you want it to. Much love all the same.