Looking for Like-minded friends

[BethCPTSD]

Hi everyone.
I've recently returned to the boards after a long absence, though I initially joined back in March of 2016. My primary disabilities are related to serious mental illness (specifics in my profile if you want) and I come back here looking really for a place to talk to others who may relate to my experiences and to help my severe loneliness. I've had a little bit of a bumpy start back on the boards, but I don't want to give up.

I would never say anyone would have to have the same type of disabilities as I do to share similar feelings or experiences. I mostly just feel incredibly lonely and ostracized from society based on the nature of my disabilities and my experiences in the world. I also use a service dog (as some of you may know) and while I need him to function (I love him and he's my lifeline) that too creates drama sometimes in the world where it may not be accepted or people may not be welcoming.

Do other people experience any of these types of feelings in your lives based on your disabilities? Even if not, how DO you feel? What is your experience? I find people usually don't understand without knowing my life story and either trivialize my illnesses or (if they are more aware of the details) they express that I should be locked up somewhere or never leave the house. I can't win. I really just need people to talk to, discuss things (including fun or funny stuff!) and who won't judge me.

I hope it's okay to post something like this here. I've met a lot of really kind, interesting, fun people here through the years and I'm looking for a place to be. I adore going to Disney because it's really the only place I feel is somewhat safe for me. It was the only safe place I had growing up too (I went a lot by myself as a teen) and that hasn't changed! Anyway, I'd love to hear from you.

Thanks!
Beth

 

[mamabunny]

I don’t have the ability to give your post the reply I think it deserves right now (for a lot of reasons, not the least of which is I have just started a new medication, and allegedly, side-effects are “light”! and I need to have a talk with the researcher who decided *that* LOL…)

I want you to know, however, that you are not the only disabled person who feels lonely or ostracized. I believe that nearly every differently-abled person I have ever met has had those feelings at some point; I wish it didn’t, but I think it may just come with the territory.

The thing that helps me the least is to get bogged down and dwell upon it; I personally believe that leads to a downward spiral that is the least-fun ride ever. Instead, I choose to focus my attention elsewhere; I have found that I can still do many things that offer value to the world; everything from volunteering in the community, to quilting and cooking and reading. I am also a “granny gamer”; I have been playing since Pong was a thing (!) and I have several favorite games on different platforms that I enjoy. Plus, obvi I spend a lot of time here, and in the Disney community in general; I literally grew up as a Disney kid (just celebrated my 50th WDW birthday!).

So, long story short… I really don’t think of myself as “disabled” most of the time. As much fun as I have naming my mobility equipment and helping people who have questions about it, I don’t really identify as disabled, per se. I am a gamer, a quilter, a crazy cat lady, and a lifelong Disney fan before I am anything else. Disabled is more a description of the fact that I need some accommodations. It’s a label that I have to use as shorthand for the rest of the world.

Remember what my Mama always said: “Normal is just a setting on the washing machine!” Don’t ever get too caught up in “normal”, because I promise you - what we all perceive as “normal” is just a fantasy that sitcoms and Disney commercials show us… it’s a romanticized, perfect, sparkly version of what someone, somewhere, though that life *should* be. I don’t know about you, but my life did not come with a laugh track, or with Mickey Mouse personally escorting me on every ride in the Magic Kingdom!

I also think it’s very important to practice what folks nowadays call “mindfullness” but what I was taught is simply gratitude. Every day, I try to find a quiet moment to sit, and reflect on what is good, or great, or wonderful in my life that day. It can be anything - from the way the sun slants through my window in the morning or watching our kitten skitter across the kitchen floor or even the smell and feel of the clean cotton fabric as I make another quilt. It doesn’t have to be anything fancy, or important; just 1 thing, every day, before I go to bed. It helps me remember to think outside of myself, and to look for good things, positive things in my world. It helps me to be a happier and more positive person.

Regardless of how many friends (and family) are in our lives, I think we owe it to ourselves - first and foremost - to remember that before we can be a friend to anyone else, we have to learn to be one to ourselves first. I know that for a long time, I was not a good friend to myself, let alone those around me; I am grateful that they stuck by me while I went through some dark times of my own.

I also learned during that time that sometimes your very best friend is a family member; that person who you don’t have to explain every thing to, because they were there - they saw you go through the flames, and come out on the other side. Both my husband and my (adult) daughter are my best friends; they have seen me through it all, and I never have to explain myself to them. Do they understand everything I have gone through? Not always perfectly, but they also accept the changes in me, and our situation with a grace and good humor that has far exceeded that which my many “friends” displayed.

All of this is to say that you are not alone dear friend. It may feel lonely sometimes, but clearly you are putting those feelings to use by searching for new friends, and I think that’s awesome.

Never forget where you started; it’s only by knowing where you started that you can see how far you have come!

Again, welcome back! I am truly glad to see you again!

 

[BethCPTSD]

Wow, Mamabunny. Thank you so much. What a kind, thoughtful, compassionate response.

You make some excellent points, and I always appreciate the reminder about "Normal" being a setting on a washing machine!! That's definitely true. I know there is no "perfect" and every single person has things they must wrestle with.

Gratitude is a really important and helpful construct, and as a person of faith, it is especially meaningful to me. One thing I am grateful for, is that there really ARE people (such as you, and others) who have it within them to be kind and compassionate to those around them. In my life it seems like it can be really hard to find those people. But I can never say they don't exist, because, I sometimes find these people in the most unexpected places! Even if there aren't always a ton of those people in my surroundings, it really only takes one, to make me feel like SOMEONE cares. With my background that understanding is really distorted and for long periods of time it can feel that the entire world is dark, violent and uncaring. But it really only takes one person to disprove that "everyone" is unloving!

As part of my years spent so far in psychiatric inpatient programs, I've gone through a lot of CBT (and many other forms of treatment.) In this form of treatment we would create sentences on one part of the white board (with the help of the therapist) that were absolute statements we believed about ourselves/the world. Something like, "Everyone hates me." We create like 15 sentences this way. Then we'd challenge every one. We were taught that if you can challenge that statement by saying "If there is one person that doesn't hate me that means some people don't hate me" (that's not my favorite example, but you get the idea) that you can break those distortions over time.

I'm not always good at reminding myself of some of those skills I've been taught, but they are very bright, insightful and compelling.

Thank you again, Mamabunny. I hope you get your meds worked out! You are a great friend!

I look forward to others comments too. Just sharing about your own experiences is so helpful!

 

[BethCPTSD]

Oh!!! And Happiest of Birthdays to you, Mamabunny!!

edit: I think this should say "Happiest of WDW Birthdays to you Mamabunny!" I think I misunderstood you the first time! ha. Sorry!

 

[BethCPTSD]

Hi again friends

I absolutely want to leave this post up, and I would love to hear from all sorts of friends about your experiences and any stories or memories you would want to share, whether good, bad or ugly!! I was just hoping this could open a friendly discussion. And I still do! Please post!

But until just recently coming back to the boards I had really not ventured much off of the Disabilities forum...so now that I'm back I am seeing that there is a "Coping and Compassion" forum too! And maybe others there would feel more comfortable relating?? I have no idea! So I may try posting over there too, and I'm sorry if this post made anyone uncomfortable! (Is cross posting allowed or should I start over with a new post there?)

I hope to see you soon! Just broadening my horizons!! lol

Beth

 

[iuki]

Beth - You and MamaBunny have very interesting and enjoyable posts. Your inner warmth comes through. I started back on this forum because I was trying to get information on foldable lightweight electric wheelchairs. Most people here are fans of Fold and Go. However, as you already know, my hubby and I decided to go with the Falcon Reclining Electric Wheelchair, which is being delivered tomorrow to my daughter’s home in the Orlando FL, area. While returning to this forum, I have really enjoyed reading about the experiences others have shared. So, although I decided and purchased my Pink Chariot, I going to continue engaging in this forum, as I really enjoy all of the posts here.

Take care to both of you.
Judy

 

[DisneyOma]

Hi Beth, and welcome back!

I started lurking on the disAbilities forum because I've been working in special education for a few decades, and found the forum to give me insight on what families go through to get accommodations, etc. It helped me help my students. Then I became aware that some of the life struggles I had (anxiety, panic attacks, and migraines that evolved from post partum depression and a cancer diagnosis) were relatable to what others were going through here as well, and I found lots of great advice, etc.

A trip to the ER a few years ago while at Disney made me realize I was trying to power though my issues down there, and I finally accepted that I needed help. Pudendal neuralgia and pelvic floor disfunction are my newest diagnoses, and now I'm looking at a possible need of a service dog in the future (for mobility access, etc.)

My pup is showing signs of being aware of me getting sick, so now I need to train her to alert, and assist. She's got a long way to go, and she might not get there, but she would be so much more useful to me than trying to haul equipment around that could cause more damage. A rollator can't move into position on its own And she could get me through a crowd safely if I was suffering from a migraine with aura. I'm not thinking of taking her to WDW though - she's a black lab, very big and she would get too hot down there, poor pup! And I'd always be with someone who could assist me there anyways.

I've worked with many students who have missed school while hospitalized for mental health reasons - and it has been refreshing to see that when they come back there doesn't seem to be that stigma that used to follow. Kids are more open now about their experiences, and the teachers I work with are understanding and kind, for the most part. The principal is amazing, and that gives us all a boost

I hope you continue to find your way, and thank you for sharing some pretty potent stuff <3

 

[BethCPTSD]

HI guys!!

I'm sorry I haven't gotten to respond to the newer comments until now! Skipping my meds for a night due to some flashbacks etc lead to a pretty horrible couple of days. I'm feeling a little more grounded and able to communicate today so I'm so happy to respond!

Dear Judy --
thank you for your wonderful comment! I think it's awesome that you have decided to stay on the boards! I appreciate your kind words and I really look forward to "hearing" more about you, and your experience with your new mobility device. (Love that you call it your "Pink Chariot"!) I hope to hear that it makes a big difference in your life! (And I would love to go back to Hawaii, so I envy your beautiful surroundings!)

DisneyOma,
Hi!! I defintely remember you from when I was on the boards years ago and I'm so happy you're here now! Congratulations on understanding more specifically the disabilities that have been causing you issues -- sometimes it's only after getting a "label" you can figure out how to treat something. I wish you the very best of luck training your black lab SDIT (service dog in training). I know sometimes it can be frustrating (just like working with a toddler) but when you start seeing your hard work paying off, and find that it is really making a difference in your life, it will be so worth it!
If you ever have any questions that I could be helpful with regarding your SD, please ask! Mine has really changed my life and I hope you will experience the same. (By the way, I am very interested in your experience in the schools. I had to leave high school by my soph/junior year because of my illnesses. It was a really uncomfortable situation for me in some ways, but I'm glad to hear kids today might be more understood.)

Take care my friends! Thanks for writing!!

Love,
Beth