Do you hide your challenges?

[alyssa-silva]

I definitely have a hard time opening up about my challenges too. I guess you could say I like to keep a low profile. I also feel like if I show my struggles, people will pity me. And I HATE pity. At the same time, if I pretend that nothing is wrong, then people aren’t as understanding as I’d like them to be. Catch-22 I guess. I’m working on being more open about things but I tread carefully. Do you find that people pity you too?

[deann-r]

Honestly I don’t get the pity vibe too often. More commonly it’s the deer in the headlights look or complete avoidance. It is a hard balance though.

[jojo-jonsson]

I do that too. All the time. Keep putting my own needs away for the sake of being a part of things.
I’ve noticed that when I don’t people don’t really wanna hang out with me. For what reason I don’t know. Probably because everything will be a little more complicated and difficult.
And I also think that it’s a bad thing cos as I’m not the real me they don’t get it. Hard part is to overcome it. How to bridge the gap.

[deann-r]

You’re right JoJo, things are more complicated. That’s what I want people to grasp. But as you point out, not everyone wants to see it. Do you think it’s better to just show it like it is or phase people into the big picture more slowly?

[jojo-jonsson]

I think choosing the moments to let people in. Then maybe through a blog or insta or Yt like you to show more and more, as long as it feels comfortable of course.
Also to speak about why we don’t share maybe.

[tammy]

I definitely hide my struggles. Not going to lie. More so around certain people then some others. Obviously my closest friends know my limitations and do things to help me that I may not feel comfortable asking others to do. Especially things like eating and drinking. My close friends will help me with all of that but others I just avoid eating and drinking all together because it makes me feel self-conscious. Honestly I think it’s just my own insecurities and not necessarily anything that anyone else is doing to make me feel that way. I tried too hard to make myself look like everybody else. It’s kind of just how I’ve always been. I’ve definitely lightened up a little bit as an adult but of course still have a lot of things I try to hide. I also just recently reconnected with an old friend from when I was 16 years old, who was somebody that I deeply and truly cared about. He had a crazy and dysfunctional marriage for the last 20 something years and I had not spoken to him during the entire time he was married. He reached out to me on Facebook saying how much he misses me and all this stuff and he wants to see me, yet I keep trying to find ways to avoid it just because of said insecurities. Even though he knows me and knows what I look like and who I am. But I’m still having a hard time letting my guard down. Ugh

[deann-r]

True Tammy, it’s so much easier to be yourself in front of certain people. It sounds like the guy you’re talking about seems pretty open about things. Is it time to throw insecurities out the window, or are they a protection mechanism so you don’t get hurt?

[tammy]

You are very right. I would say I’m at a 50/50 stance about it all. Guess we will have to see what happens. And yes he is a very open person with it all but I’m still a bit skeptical LOL. Even though I’ve known him forever. We did go a long period of time without seeing each other or speaking. So I’m kind of like, are you still the old you? Or are you a completely different person that I don’t really know anymore?

[anna]

I’ve noticed that some people are surprisingly cool about this stuff while others just feel awkward even when I don’t. Most of the time I avoid sharing too much though. People tend to think that we live our lives in misery, constantly ruminating on our innumerable health issues and challenges. I used to believe that if they knew more about my disability, they would realize that my life can be both difficult and fulfilling just like theirs. Clearly, it doesn’t always work this way. I guess you have to choose your audience to open up to.

[deann-r]

What do you think makes people cool with it? Maybe if we could figure that out we could be more open. In the meantime, like you, I choose the audience.

[anna]

Their personality I guess. Some people are just more laid-back about everything while others are too scared to deal with unpleasant situations they don’t understand and they can’t handle (not that anyone asked them to), so it’s easier for them to look the other way. That’s why I choose the audience. I’m always willing to share, but not everyone is receptive.

[micaela-macdougall]

It’s funny, I wish I was more open, but I end up not asking for help a lot of the time.  I’m not ashamed, it’s just too much trouble to explain what I need.  So if I have someone who knows how to feed me, I don’t mind being fed in front of friends – but if someone offers me food or drink and I don’t have anyone ready to help me, I’ll just decline instead of asking them to help me.

I actually had a moment last week where I was showing off photos of my new bathroom to a friend and I started explaining how my hoyer lift works.  I realized later that was the first time I have ever talked about my lift (other than training someone how to use it).  People never ask, “What’s that?”, they don’t want to intrude.  It’s on me to bring it up.  But it felt good to talk about something that’s such a big part of my life, especially since this was a close friend who was really interested and curious.

[deann-r]

Spot on! I know a lot of people are more than willing to help, but I also know they have no clue how to put on my coat or whatever the task is. Do you think it would be beneficial to briefly explain why we decline? I know it’s easier just to say no thanks but maybe further explanation would help people understand.

On one hand I hate explaining reasons for equipment and such, but like you say when it’s a big part of our lives it’s important to have folks understand. Might as well take the opportunity if you have a captive audience.

[mike-huddleston]

Hey DeAnn.  Interesting topic/question.  So, bear in mind that I’m a bit older (60) than you and some others here, so take my response with a grain of salt.  Well, all of my responses.

I have felt awkward before and tried to hide my challenges, not wanting to be a burden at times to others.  I wish I hadn’t done that.  So, I was diagnosed Type 3 at the age of 16, knew there were problems before then with two older diagnosed siblings.  Maintained the ability to walk at least in some capacity until the age of 52 in 2015.  When I was ambulatory, one of the many ways I hid my challenges was to withdraw from things that I knew would present challenges or difficulties, and in some cases, risks that would be presented.  I missed out on many experiences by doing this.

As I’ve gotten older, I embrace the opportunity to do things my power chair provides and if a situation requires assistance, I don’t hesitate to ask.  And that may include complete strangers.  My experiences show that most people are willing to help if asked.  My response is broader in nature, but this applies to just about any situation.  Obviously you want to maintain a sense of privacy and autonomy, but don’t do that at the expense of causing yourself difficulties or missing out.

So much of the unfortunate politicalization of “woke” and DEI completely misses the mark.  Having empathy and understanding the plight of others and that their experiences are different than mine is actually a good thing.  DEI, and I ran the employee resource group for associates with disabilities for the entire company of over 40k associates that I recently retired from, is about working toward being able to be your entire self and about dealing with aggressions and micro-aggressions, bias and unconscious biases.  Sure, that was for work, but it allowed me to open my eyes to so many more examples and life experiences beyond the boundaries of work.

Being vulnerable, and that in at least some part is what you’re talking about, allows others to increase their awareness and empathy.  No, not everyone, because some people simply aren’t wired that way.  And that’s okay.

 

[deann-r]

Live and learn right? Even though I am more open now, I look back and realize I probably missed out on some stuff too because I didn’t want to be seen struggling or didn’t want to ask for assistance. That’s part of the reason I do videos and the forums. Instead of lecturing the younger generation maybe if they see by example it’ll come easier for them. Do you think if there was more representation as you were growing up it would have helped?

Your job sounds interesting. There’s so many things to learn about people. In a society that’s so quick to judge it’s really important to consider those life experiences.

[mike-huddleston]

That actually wasn’t my job, but something I volunteered for and applied for.  I had to go through a selection process and was fortunate that they picked me.  I was actually an engineering manager in IT.

I definitely think more representation growing up would have helped.  This is why I’m such a strong advocate for trying to be an example for others.

Part of my prior reply was not included (I thought I edited the original response), but one of the things I mentioned was to not place yourself in harm’s way, but as long as you can safely participate and still not place yourself at risk, physically or emotionally, then try to do so.  Not everyone will be willing or able to help, but those who are both will provide you with a little insight into them while opening up more experiences and opportunities for you.

[jojo-jonsson]

I used to be that way when I was younger and healthier than I am today(47). I usually didn’t have any helpers so if I needed help with anything I asked someone close by. Good thing.
Nowadays the help I usually need is too advanced or special to let just anyone help and I have speech problems. It’s all about what and where. If it’s an emergency sure but if it can wait I will. I put my energy into the fun parts and save the mess for later 😉. Not sure yet if it’s good or bad.

[blake-watson]

I’ve had this page open in a browser tab all day trying to think of how to reply and waiting for a good opportunity to do it in between work.

I’m of two minds on this. While I think this is a huge problem of mine, I also think I’m pretty good at dealing with it. Oftentimes I feel like I am pretty open about the challenges I’m facing—I talk about them, write about them, and generally don’t shy away from disability related conversation. But at the same time I feel like a lot of my time is spent trying to appear “normal and decent” while dealing with all sorts of issues behind the scenes.

Anyway, this is the perfect time to give a shoutout my brother’s seminal work in this space: https://blakewatson.com/ihs/pee-math/

(As far as I have been able to establish, he invented the term back in 2012, inspired by a scene in The King of Queens.)

[deann-r]

I often wondered about the origins of the term “pee math.” I can’t recall where I heard it first. You reminded me how much I loved The King of Queens too. That scene was hilarious.

Totally with you on the two mindset aspect. Even though I’m open I also want to fit in. Sometimes those aren’t conducive to each other. Would increasing exposure, for lack of a better term, be beneficial in making things like this less taboo?

[mike-huddleston]

Love and appreciate this, Blake.  Thanks for sharing.