I feel the same way that Jackie feels. Am I putting myself in the wrong direction? I’ve been feeling that way for 5 years now. But I feel right now my course of where I want to be maybe going in a different direction for now. I’m scared to death about it. And it may not work. But for right now I’m going into it. But is it “all in my head” for thinking I could do this? It really frustrates me that I have to turn another way to go through it. And I completely understand what Jackie is feeling and as I always hate to compare what it was before I got MS. I will never be that way ever again. It’s just memories. Some of them great memories, but sometimes I feel self-centered saying that’s not enough.
Does that make me a bad person for thinking that way? Am I the only one who thinks that way sometimes? Of course I don’t think that way all the time. But sometimes it just goes through my brain.
I don't think any of that makes you a bad person. It's just how you feel and that's totally valid. I feel completely the same way about feeling like my life is not enough sometimes because it doesn't look like it used to (even though I've had my disability my whole life) or like I think I "should" be. Thank you so much for sharing your feelings and experience with this topic! Navigating all of this is not easy, that's for sure.
I generally agree with you on avoiding “have you tried this?” You have to read the room very carefully with that one, and then I usually try to say something like, “have you ever heard of X?” so the person can tell me “been there, done that” or “no, I haven’t.” A few weeks ago, at my tattoo consult appointment, my (longtime) artist was telling me about her chronic neck/shoulder/nerve pain that no doctor has been able to figure out, that comes and goes, and that often keeps her from working. I did the, “have you ever heard of pain reprocessing?” and she hadn’t and was super curious. She pretty immediately looked into the few tools I shared with her and started feeling a little better almost immediately, and she’s going to keep at it.
The read the room part is that this is obviously not a strategy that everyone can benefit from, so it would be ridiculous to bring it up to everyone in pain. But pain that comes and goes and has no clear cause is most often neuroplastic, and responds well to the guidance around teaching the brain it’s not in danger and doesn’t need to send the pain signals.
Ultimately though, respect someone’s desire to not want the info. I appreciate that you added that to the end of this post!
I have to get a screenshot from Tiffany Yu’s book that I’m reading because she so perfectly explained why unsolicited advice or the “have you tried this” can be so triggering or problematic for disabled people. I do agree with you though that there can be exceptions and especially when you’ve been through stuff yourself, your experience might end up helping someone else. I’m also coming from a place of never having gotten anything helpful from someone giving me unsolicited advice. I’ve gotten the “I have this great product for you”, “I’ll pray for you” and my always favorite “have you tried a positive attitude?” so my experience definitely informs my attitude here 😂
So many good points here! And I feel like others often limit can and cannot for us disabled folks without our input, which makes things even harder to navigate.
The advice “have you tried this” does feel invalidating! It’s hard to share with someone the problems you’re having, and it is so in our nature to want to help someone that is having difficulties. But…if you make yourself vulnerable enough to share the problem you’re having and then they come up with a “solution” that doesn’t work for you, or is irrelevant to the problem you’re having, well sometime it just makes you feel worse for even sharing. It’s usually well-meaning but often times it hurts more than it helps 🤷🏼♀️
No apologies necessary at all! Some things I share here, I totally welcome suggestions or feedback on (most things really). This one was a little different, so that’s why I added that text to it. I’m at a point in my life where I just can’t handle hearing “but have you tried this?” or the insinuation that I’m just afraid or not trying hard enough anymore. Always appreciate you reading and commenting!
Reminds me of what Stella Young says in her TED talk: "No amount of smiling at a flight of stairs has ever made it turn into a ramp." (No matter how much we may want that to be the case!)
I feel the same way that Jackie feels. Am I putting myself in the wrong direction? I’ve been feeling that way for 5 years now. But I feel right now my course of where I want to be maybe going in a different direction for now. I’m scared to death about it. And it may not work. But for right now I’m going into it. But is it “all in my head” for thinking I could do this? It really frustrates me that I have to turn another way to go through it. And I completely understand what Jackie is feeling and as I always hate to compare what it was before I got MS. I will never be that way ever again. It’s just memories. Some of them great memories, but sometimes I feel self-centered saying that’s not enough.
Does that make me a bad person for thinking that way? Am I the only one who thinks that way sometimes? Of course I don’t think that way all the time. But sometimes it just goes through my brain.
I don't think any of that makes you a bad person. It's just how you feel and that's totally valid. I feel completely the same way about feeling like my life is not enough sometimes because it doesn't look like it used to (even though I've had my disability my whole life) or like I think I "should" be. Thank you so much for sharing your feelings and experience with this topic! Navigating all of this is not easy, that's for sure.
I generally agree with you on avoiding “have you tried this?” You have to read the room very carefully with that one, and then I usually try to say something like, “have you ever heard of X?” so the person can tell me “been there, done that” or “no, I haven’t.” A few weeks ago, at my tattoo consult appointment, my (longtime) artist was telling me about her chronic neck/shoulder/nerve pain that no doctor has been able to figure out, that comes and goes, and that often keeps her from working. I did the, “have you ever heard of pain reprocessing?” and she hadn’t and was super curious. She pretty immediately looked into the few tools I shared with her and started feeling a little better almost immediately, and she’s going to keep at it.
The read the room part is that this is obviously not a strategy that everyone can benefit from, so it would be ridiculous to bring it up to everyone in pain. But pain that comes and goes and has no clear cause is most often neuroplastic, and responds well to the guidance around teaching the brain it’s not in danger and doesn’t need to send the pain signals.
Ultimately though, respect someone’s desire to not want the info. I appreciate that you added that to the end of this post!
I have to get a screenshot from Tiffany Yu’s book that I’m reading because she so perfectly explained why unsolicited advice or the “have you tried this” can be so triggering or problematic for disabled people. I do agree with you though that there can be exceptions and especially when you’ve been through stuff yourself, your experience might end up helping someone else. I’m also coming from a place of never having gotten anything helpful from someone giving me unsolicited advice. I’ve gotten the “I have this great product for you”, “I’ll pray for you” and my always favorite “have you tried a positive attitude?” so my experience definitely informs my attitude here 😂
All the time... 🙏
So many good points here! And I feel like others often limit can and cannot for us disabled folks without our input, which makes things even harder to navigate.
Absolutely! Such a great point.
The advice “have you tried this” does feel invalidating! It’s hard to share with someone the problems you’re having, and it is so in our nature to want to help someone that is having difficulties. But…if you make yourself vulnerable enough to share the problem you’re having and then they come up with a “solution” that doesn’t work for you, or is irrelevant to the problem you’re having, well sometime it just makes you feel worse for even sharing. It’s usually well-meaning but often times it hurts more than it helps 🤷🏼♀️
Exactly! You summed it up perfectly.
"I would kindly request for no advice giving or “have you tried this?” on this post too."
Yikes! I think I've been guilty of this. Thanks for explaining what's wrong with it so well. Gotta keep it in mind for my grown kids, too.
No apologies necessary at all! Some things I share here, I totally welcome suggestions or feedback on (most things really). This one was a little different, so that’s why I added that text to it. I’m at a point in my life where I just can’t handle hearing “but have you tried this?” or the insinuation that I’m just afraid or not trying hard enough anymore. Always appreciate you reading and commenting!
Reminds me of what Stella Young says in her TED talk: "No amount of smiling at a flight of stairs has ever made it turn into a ramp." (No matter how much we may want that to be the case!)