I have hidden disabilities, and I talk about them. It\u2019s a little thing I do towards normalizing a conversation that is too-often shamed into silence. When I share on social media, though, there\u2019s something I always brace myself for: the onslaught of \u201ccures.\u201d<\/p>\n
I know you mean well. I know you care about me and feeling helpless is a hard place to be. But if you want to suggest any treatment ideas, please follow these ground rules.<\/p>\n
1. Don\u2019t send me articles you\u2019ve found online. 2. Or if you really *must* send me that article\u2026. 3. Don\u2019t do it for you. 4. Be mindful of my means. 5. If it works for you, that doesn\u2019t mean it\u2019s going to work for me. Basically, I ask that you try not to minimize what I\u2019m going through, that you don\u2019t pressure me, and that you\u2019re mindful of my own efforts and means. That being said, I do recognize any time someone is being caring and concerned, even if you\u2019re not perfect at it; no matter what, keep being you, with your heart and support. I see it, and thank you.<\/p>\n","protected":false},"excerpt":{"rendered":"
\n<\/strong>If it\u2019s an actual legitimate article about my fibromyalgia or osteoarthritis, I\u2019ve probably already found it and read it, or read something similar. I\u2019m a thorough self-advocate and am always active in finding ways to improve my life. Many of the articles online are fabricated click-bait. Those of us with fibromyalgia are especially targeted by this overinflated fluff or outright lies about cures; it\u2019s because our illness continues to lack credibility, and the manufacturers of lies think if we\u2019re na\u00efve enough to believe we\u2019ve got this \u201cmade up\u201d disease, then we\u2019ll believe some article about curing it with a mold kit or a boiled donkey hair tonic. Whatever the validity of the article you send me, if I\u2019m being honest, I have to say it hurts my feelings; it\u2019s like you believe that my devastating illness is actually so minor I can do one little thing to fix it; or that I\u2019m not working hard trying to help myself and find any and all information on my own; or both \u2026 and I\u2019m choosing to keep suffering. I know you don\u2019t mean it, but that\u2019s how it can feel.<\/p>\n
\n<\/strong>Try not to make it out like the end-all, be-all cure (because there is<\/em> no cure, and if there were, it\u2019d be on CNN *and* Ellen, not www.tryingtosoundlikearealnewswebsite.com), and give me a little credit for being the self-advocate that I am. You might say, \u201cHave you seen this yet?\u201d which acknowledges that I\u2019m doing my own research, or you could say, \u201cWhat are your thoughts on this?\u201d which puts me in the position as expert on my own illness. Asking me one of these questions makes it a conversation, not an imposition, and it\u2019s also non-promissory.<\/p>\n
\n<\/strong>Oftentimes, when people send me flippant, one-off, \u201cwhy don\u2019t you just\u2026.?\u201d solutions <\/em>it can feel like A) You\u2019re trying to check \u201chelp Christina\u201d (or worse, \u201cfix Christina\u201d) of your to-do list for the day so you can feel like a better person; or B) You want to send over a solution so that my problem will go away and then you don\u2019t have to think about it, worry about it, or empathically feel it anymore\u2014as if you want it gone more for your sake than for mine. My illness and chronic pain are my problem, not yours.<\/p>\n
\n<\/strong>OK, let\u2019s say you still really want to send me a treatment, because you do really care and it\u2019s actually a really cool idea that probably can help. The problem is, I might not be able to do it. It might be A) too expensive, B) not available in my local area, C) outside my comfort zone, or D) illegal. I\u2019ve had all kinds of solutions presented to me, from sensory deprivation float therapy, to CBD oil, to just plain old swimming. For each of these, there are reasons they\u2019re not possible. Some people have even gotten pushy with their ideas, and I just want to say I heard you the first time. Consider that we might even be triggered by a recommendation. I often get very frustrated and depressed when I\u2019m reminded I\u2019m too freaking lower-middle-class to try some things that could very well change my life for the better.<\/p>\n
\n<\/strong>So maybe you\u2019ve got an awful chronic condition, too. We are all different, and even if I have a same condition as you, your go-to coping mechanism isn\u2019t necessarily going to work for me, so please don\u2019t impose it upon me. For example, you might not like being alone when you\u2019re depressed, but please don\u2019t show up on my doorstep when you find out I\u2019m sad. I guarantee I haven\u2019t had a shower and I\u2019m likely farty from whatever comfort food I found in the back of my cabinet. Being near me would be bad for us both.<\/p>\n