Navigating personal struggles and fear of judgment

[ehinOWHEN]

Hey everyone,

it’s been a while since I posted here regularly. And I've also noticed a drop down in number of posts being made compared to previously, I really hope everyone is doing okay and winning their silent battles.
Honestly, there’s been so much going on these last few months, and I’ve been hesitant to talk about it. I don’t even know how to put everything into words.

I’ve been dealing with a lot of personal challenges involving family and some experiences that, to be honest, I still feel a bit embarrassed and scared to talk about. In my country, there’s a lot of misunderstanding around epilepsy and mental health, and I worry that if I share everything, people might start seeing me differently. This fear sometimes makes me hold back, but at the same time, I don’t want to keep bottling things up.

I feel like this forum is one of the few safe places where I might be able to open up gradually, even if it’s hard. If anyone here has ever felt this way like you want to share but are also afraid of judgment how did you find the courage to speak up? Any advice would really help.

 

[Sabbo]

I agree that it can often be hard to open up to others about seizures/epilepsy. I have been pretty open with my friends about my epilepsy, and I always wear a medical bracelet. At times, I feel dealing with family members is a bigger problem. Not so much about the epilepsy, but how they treat me due to it. Some will attempt to be so overprotective that it's unbelievable. My mother is the most annoying. She still tries to treat me (at times) like I'm a preschooler--& my older son is 25!

 

[ehinOWHEN]

I agree that it can often be hard to open up to others about seizures/epilepsy. I have been pretty open with my friends about my epilepsy, and I always wear a medical bracelet. At times, I feel dealing with family members is a bigger problem. Not so much about the epilepsy, but how they treat me due to it. Some will attempt to be so overprotective that it's unbelievable. My mother is the most annoying. She still tries to treat me (at times) like I'm a preschooler--& my older son is 25!

Oh, I completely get what you’re saying about family treatment. It’s frustrating because, for me, it wasn’t overprotectiveness but more about a feeling of being left on my own. Rather than stepping in to support me, it was like my struggles were mine alone to deal with. It’s incredibly exhausting, and sometimes it just makes me feel like they don’t understand the impact this has on me. So, yeah, I really feel the weight of that family dynamic, too.

 

[gina19]

I don't have family

Unfortunately, due to abuse, they are no longer in my lives (not even in the country actually, don't know where they are)

I just know that my grandparents are dead. Beyond that, I have no contact

As for being judged, I do tend to keep a lot of things to myself which is ashame, because these things need to be out in the open, and if you don't post about them, you're never gonna know if anyone else feels that wayy.

One of my things that I do worry about and think about a lot is end of life and final wishes, and I have recently tried to (not really succeeded), talk about it with people.

I have a habbit on forums where I tend to post a message about how I'm feeling, realise it's stupid and never go back to read the replies because I feel I'll be bashed for it. I've done it on here too.. I posted something about having a blocked ear, then started reading all the other threads but that one.

I think for me it's more because I've never had people to listen, it's hard for me to understand that people actually care and want to help.

I suppose a way to think about it (and I try to myself), that if you post a message on a forum like this and get judged, then that member shouldn't be on the forum as it's a friendly supportive space.

easier said than done, though

 

[gina19]

Someone once told me, " if it matters to you, then it matters."

I try to take that in to account when I'm sharing... you know these are my struggles, they have an impact on my life who cares what others think?

I recently shared with people (and I believe I mentioned it a little on here), that I missed out on halloween because of a seizure.

So many people I shared it with are like so what?. It's halloween. It's for kids. Get over it.

But I had plans. I had things I wanted to do (and things that I hope I can still do)

Is it too late to celebrate halloween in November?

I hope not

 

[ehinOWHEN]

I don't have family

Unfortunately, due to abuse, they are no longer in my lives (not even in the country actually, don't know where they are)

I just know that my grandparents are dead. Beyond that, I have no contact

As for being judged, I do tend to keep a lot of things to myself which is ashame, because these things need to be out in the open, and if you don't post about them, you're never gonna know if anyone else feels that wayy.

One of my things that I do worry about and think about a lot is end of life and final wishes, and I have recently tried to (not really succeeded), talk about it with people.

I have a habbit on forums where I tend to post a message about how I'm feeling, realise it's stupid and never go back to read the replies because I feel I'll be bashed for it. I've done it on here too.. I posted something about having a blocked ear, then started reading all the other threads but that one.

I think for me it's more because I've never had people to listen, it's hard for me to understand that people actually care and want to help.

I suppose a way to think about it (and I try to myself), that if you post a message on a forum like this and get judged, then that member shouldn't be on the forum as it's a friendly supportive space.

easier said than done, though

Hey Gina,

Wow, your post really struck a chord with me. I totally understand that deep-seated fear of putting yourself out there, only to worry about being judged or misunderstood. I’ve also had my share of holding back, especially since I grew up in an environment where I felt unheard and sometimes scolded for just sharing my feelings. It’s been a real hurdle to overcome.

I really admire your courage in opening up about these things, especially something as sensitive as end-of-life thoughts. That’s something I’ve thought about too, but like you, I often struggle to bring it up or to trust that people will understand. Your perspective on forum spaces being safe for sharing without judgment, that’s something I’ve been trying to remind myself as well.

It’s honestly so comforting to know there are others out there who get this. Sometimes, just knowing someone else has a similar experience makes the fear a little easier to face. So thank you for sharing this. it means a lot to me. I hope we both find more strength to share our thoughts without hesitation and keep supporting each other through it

And how have you been lately? I noticed you haven't been posting as much as you used to. Are you good?

__Owhen

 

[ehinOWHEN]

Someone once told me, " if it matters to you, then it matters."

I try to take that in to account when I'm sharing... you know these are my struggles, they have an impact on my life who cares what others think?

I recently shared with people (and I believe I mentioned it a little on here), that I missed out on halloween because of a seizure.

So many people I shared it with are like so what?. It's halloween. It's for kids. Get over it.

But I had plans. I had things I wanted to do (and things that I hope I can still do)

Is it too late to celebrate halloween in November?

I hope not

I really feel you on this. If something matters to us, then it truly matters, and it’s valid. I’m so sorry you missed out on Halloween because of a seizure—especially when you had plans and things you were looking forward to. People can be quick to dismiss things that aren’t important to them, but that doesn’t mean they don’t matter. Our experiences and our struggles are real, and they impact us.

Honestly, I can’t speak for everyone else here, but you’ve definitely got a friend in me. I care about what you’re going through and all the things you want to share. After all, we’re all we’ve got here, and it means a lot to have each other to lean on.
We don't celebrate Halloween here in Nigeria, but so long its something that matters to you and you care, you shouldn't care what the naysayers talk about. Its your life, If you have anything in mind to do, I hope you still go for it!

 

[Porkette]

Hi OWHEN,

Over the yrs. I have learned that if I'm open to others about my epilepsy and tell them about it and what to do if
I should have a seizure then they understand things better and they aren't afraid. Years ago I was sent to a boarding
school because I had epilepsy but I didn't let that stop me because I came back to public school and graduated with
no problem. Don't let epilepsy run your life and take over that is what has upset many people over the yrs. You should
go online and type in famous people with epilepsy that live in your area and I bet you would be surprised. There are many
famous writers, musicians, football players, actors and actresses who have epilepsy and the epilepsy doesn't stop them
so don't let it stop you and don't let others stop you because of it. You may want to do what I did and speak at schools
and colleges about it teaching people about it.
I wish you the best of luck and May God Bless You,

Sue

 

[gina19]

Hey Gina,

Wow, your post really struck a chord with me. I totally understand that deep-seated fear of putting yourself out there, only to worry about being judged or misunderstood. I’ve also had my share of holding back, especially since I grew up in an environment where I felt unheard and sometimes scolded for just sharing my feelings. It’s been a real hurdle to overcome.

I really admire your courage in opening up about these things, especially something as sensitive as end-of-life thoughts. That’s something I’ve thought about too, but like you, I often struggle to bring it up or to trust that people will understand. Your perspective on forum spaces being safe for sharing without judgment, that’s something I’ve been trying to remind myself as well.

It’s honestly so comforting to know there are others out there who get this. Sometimes, just knowing someone else has a similar experience makes the fear a little easier to face. So thank you for sharing this. it means a lot to me. I hope we both find more strength to share our thoughts without hesitation and keep supporting each other through it

And how have you been lately? I noticed you haven't been posting as much as you used to. Are you good?

__Owhen
This is it. Exactly

If you grew up in that kind of environment, that's the way you are going to feel

I grew up with an abusive family, and so now when I meet someone (regardless of their intentions), my first thought is.. will they abuse me?

It takes me six or seven meetings with someone (maybe more), before I can let them close to me and touch me. That can be really hard sometimes sitting at a distance because those people have all kinds of questions for me- of course the main one being, why.. what did I do wrong?

 

[ehinOWHEN]

Hi Sue,

I love how you’ve taken charge, not letting epilepsy define your path or hold you back from what you want to accomplish. Its so inspiring
I can see how sharing openly with others has helped you build understanding and support, and it’s encouraging to think that maybe I could try that approach as well. But its easier said than done haha

The only celebrity I knew that lived with epilepsy was Cameron Boyce. He was one of my favorite child actors. He died years ago. And that was even before I had developed this condition.
Sometimes it even gives me anxiety
If someone as wealthy as he was and all the support systems he had could not make it, what chance do I stand?
Thank you again for being so open with me, and for the encouragement. It means a lot to have this support, and to hear from someone who’s turned their challenges into strengths. I wish you all the best too, and may God bless you as well.

Warmly,
Owhen

 

[ehinOWHEN]

Hi Gina,

I completely get what you mean. Growing up with constant emotional and psychological abuse, I know that feeling of always being on edge around people, like you’re just waiting for them to show a darker side. It’s such a strong reflex to protect ourselves, especially when we’ve learned to expect harm or neglect as a way of life And I can imagine how hard it must be to feel so distanced in those moments, with people questioning why we might pull back, even if we can’t bring ourselves to explain fully.

It’s sad but kind of comforting too, seeing how much we seem to share these kinds of struggles like there’s this unspoken understanding between us, even if it’s due to a painful shared experience. It really does feel like, for so many of us in this community, there’s a thread of neglect or hurt that just never quite leaves.
Sigh Sending you so much support and virtual Hugs, Gina

 

[Sabbo]

I've learned to be open about it for a few reasons. Kids made fun of me when I only had simple partials, saying I was just faking headaches to get out of doing work. I sometimes feel my parents (my mom, actually) hid it a bit--probably because she didn't understand it. Since the complex partials started, I've been in situations that put me in danger, & if one happened around other people, I need to know the circumstances/situation. My friends at the masjid I go to weekly know all about my seizures and what to do if one occurs. My husband & sons understand & care very much, but even they can't truly understand my struggles.

The complex partials began about one year after I completed my college degree. What is very painful for me is that I was never able to work, despite having a BS in Economics & an Associate's Degree in Accounting. When at the community/junior college, the counselor didn't tell me that most of the accounting classes I took wouldn't transfer. At the university, I would've had to repeat nearly 3 semesters of classes to do a BS in Accounting--IF I passed the exam allowing me to declare that as my major!!

 

[Sabbo]

I often feel my family didn't support me like they should have when I was studying. If they had, I probably would have studied accounting, which came VERY easy to me, even if it meant staying in college longer or literally repeating courses from the junior college. I even worked in the University medical department's accounting office as part of my student aid work study when I went back there.

What's made life more painful/unfulfilling for me is my dependency on others to go anywhere I need to go. I can't even work in a store--not even part-time. If I had a job, getting to & from it would be DIFFICULT, so it would have to be 100% remote.

 

[ehinOWHEN]

I often feel my family didn't support me like they should have when I was studying. If they had, I probably would have studied accounting, which came VERY easy to me, even if it meant staying in college longer or literally repeating courses from the junior college. I even worked in the University medical department's accounting office as part of my student aid work study when I went back there.

What's made life more painful/unfulfilling for me is my dependency on others to go anywhere I need to go. I can't even work in a store--not even part-time. If I had a job, getting to & from it would be DIFFICULT, so it would have to be 100% remote.

I really hear you on the challenges of limited support, especially when it came to something you clearly have a knack for, like accounting. It’s tough when we look back and can see a different path that might have been possible with a bit more family backing. I know that dependency on others for things which if situation were different we could do ourselves , it really affects the sense of freedom we all want in our work and daily lives.

Actually, I’ve been talking with a few people here in the forum, like Gina and Sue, about the idea of creating a dedicated space for us to discuss schooling, career pathways, and navigating these challenges together. A section like that could really help us share experiences and maybe even brainstorm ways to make things like remote work more feasible for each other. I feel like there’s a lot we could offer one another by pooling ideas and strategies.

What do you think about the idea of a dedicated school and career section? I’d love to hear your thoughts!

 

[Sabbo]

I think it would be great.
I've asked my sons to help me sign up with a website to sell the crafts I make when they're home over the holidays. I originally looked at one signing up on of the most popular ones, but there are around 1000+ people already selling one of the things I make. I miss the days of all the craft fairs in the shopping malls. For one thing, shipping costs aren't an issue when selling products at craft fairs