What is the hardest aspect of your physical or mental health condition, if you have one?

[calebzz1]

Hello all, just wanted to start a discussion on something that has been on my mind lately.

"What is the hardest aspect of your physical or mental health condition, if you have one?"

For myself, I do not have any mental health conditions but a pretty brutal visual impairment.

I suffer from severe, intermittent horizontal double vision that is highly variable in nature and I'm barely functional overall.

The hardest aspect for my situation is having to mourn my old hobbies such as reading books, playing videogames, watching movies and television.

This affects so much, from relating to others and more.

My personality is also changed, without my aid I am cold and pragmatic.

I just want a cure and care about little else but it is purely altruistic in nature.

If everything goes back to normal, I can continue working, enjoying old hobbies, go back to community college, continue learning how to drive and more.

The possiiblities are endless and I can help a lot more people which is why I'm so focused on this situation.

That's a luxury now and I don't even know what it's like to see single in both eyes, I get "fusion" moments where my muscles work hard enough and I can "will" my eyes to be straight but it's few and far between.

I am a fall risk, live "moment to moment" as I tell providers because my vision doubles in and out like an accordion all day, everyday.

I only get a break when closing an eye or wearing my patch.

Honestly, it gets so bad I have to decide which object is which and I feel like I'm in a survival horror game sometimes.

I swear it affects a person's cognition, speech, movement and everything but the MRI/MRA was clear.

I still can't believe that based off what I go through.

I don't get headaches or pain which makes sense at least.

I also wanted to touch on this point, people don't always understand the extent of my impairment as well and are not empathetic.

I'll list two situations.

For the first one, I decided to head to my local UPS store to ship my frames back since my mom was in the hospital.

Everything was fine, had to bring my translucent patch but it's very finicky and I had to hold it with a binder clip, later found out that I could have tied it up but that was after the fact.

Anyways, on the way back it was super hot outside and I didn't have my bifocals as I just shipped them back.

I knew this, but had to put my phone at arm's length just to see it and was able to call my Uber.

A woman near my location was loudly talking about purchasing condos and just seemed out of touch in general.

Another dude was just sitting there chilling.

Of course, no one bothered to assist.

Anywho, it was like having low vision and I barely saw the white blur of the car.

Thankfully, I made it home safely while hobbling with my wooden cane of course to and fro.

The whole experience was a lot and it demonstrated how impairment makes everything harder across the board.

Next, this is the second situation.

I decided to check the mail yesterday and there was a worker sifting through everything of course.

I asked politely if I could access the mail box as he wasn't near it.

I was clearly struggling to find what key to use as I rarely go out and he didn't even offter to help or anything.

After this, the man gives a look like I was bothering him even though I'm the impaired one.

Homeboy looked like a typical silver fox (gross) complete with being buff and had tattoos.

I thought about saying sorry and expressing that I'm visually impaired but I really don't owe anyone anything in my state.

That interaction was super annoying looking back.

I'm not a people pleaser anymore which is what I realized from the situation and how I reacted.

Anyways, I had to tell my friends recently again what was going on because they think there's an immediate cure to my situation and I can do everything like nothing happened.

One of them kept pinging in our Discord server to play this game I really wanted to try, Sons of the Forest in particular.

He didn't really know how serious the situation is, I've just been dealing with triggers like that and it's just difficult knowing I can't do all of those hobbies anymore.

I struggle so much daily.

I was recently told I have to be half-blind and alternate with either a 0.2 Bangerter foil (special medical patch) or contact paper for a whole year.

This is the only way I can be cured and my spasm alleviated.

I've worked so hard for alternatives which is already explained in my introduction post.

What's ironic is that even though I'm on this site, I have no history of mental health conditions and will not CTB unless the condition becomes permanent.

I try to think broad and be grateful that I can see clearly even with the aid of a drop and people have it much worse.

For example, there's a little girl who is blind that I always see on Facebook but she is always super positive.

Her faith is really strong in the Lord and she is always happy despite her circumstances of being functionally blind at a young age.

I need to get like that but it's hard.

I know that one day everything will be cured but I don't know when.

The whole situation boggles my mind that I have to work so hard for something that should be given, honestly.

I just hate the feeling of not being able to do what I want to do on a given day, it's very annoying but at least I've gained a lot of empathy for people who deal with visual impairment.

I hope you are all having a great day, thankfully I will be able to make a lot of progress next month but July has been dragging after my mom pulled her stunt.

I lost a lot of trust in her after that and just would rather live alone, it's enough just dealing with my impairment on a daily basis.

 

[helencry]

Well the living part really sucks, love to end that bit.

 

[orbit]

For me it would be my reliance on other people. I just cannot function alone, I've tried being independent so many times but it's not possible without utterly ruining my already frail health.

Having good well intentioned people in your life is a rarity and a privilege that I unfortunately do not have, my mother is my primary carer but only performs her caring duties when she feels like it. It makes me feel like a burden, like my life only matters when it's convenient. I am currently working on trying to get placed in assisted living, but until then it's a game of chance wether I'll be able to eat or take my medication each day.

Once I'm able to have better support, I'm sure I'll thrive- but the fact I have to wait and rely on someone to step up in order for me to have a good quality of life is disheartening.

 

[calebzz1]

For me it would be my reliance on other people. I just cannot function alone, I've tried being independent so many times but it's not possible without utterly ruining my already frail health.

Having good well intentioned people in your life is a rarity and a privilege that I unfortunately do not have, my mother is my primary carer but only performs her caring duties when she feels like it. It makes me feel like a burden, like my life only matters when it's convenient. I am currently working on trying to get placed in assisted living, but until then it's a game of chance wether I'll be able to eat or take my medication each day.

Once I'm able to have better support, I'm sure I'll thrive- but the fact I have to wait and rely on someone to step up in order for me to have a good quality of life is disheartening.

I see, sorry to hear about your situation.

I also am living with my mother but after her recent incident she's pretty unstable overall and unpredictable.

I'm planning on moving out long-term once I get benefits and can obtain a housing voucher.

I hope your plan with assisted living works out.

"Once I'm able to have better support, I'm sure I'll thrive- but the fact I have to wait and rely on someone to step up in order for me to have a good quality of life is disheartening."

Yeah, this is really profound and how I feel as well.

A lot of my problems come down to waiting and being patient which is very frustrating but I have learned that apathy is key to an extent.

The less I care about my situation medically the better I feel.

I try to avoid talking for hours and hours while I can do something else more productive instead.

 

[GhostInTheMachine]

I'm trans. Just existing feels like I'm stuck in a house of mirrors of my own identity. Aside from that, for a while I had a nasty skin condition that would cause frequent boils, cysts, abscesses, and carbuncles to appear all over my body. It was extremely disfiguring and painful, and most severe on my face. I have since seen a massive reduction in them as my HRT has slowed my body hair growth (the growths always resulted from infected hair follicles), and I have gotten laser hair reduction on my face which has eradicated them. I still suffer from the mental anguish of being trapped in a body I am not aligned with.

Other than that, I probably have some kinda of post-traumatic stress from my upbringing as I was both physically and emotionally abused, as well as inappropriately touched at times. Honestly though, the trans thing has taken more of a toll on me than anything else.

 

[Hellis]

The anxiety attached to it all. Even when literally anything gets better all I can think about it when I'll get worse again, making it so that it never actually gets better LOL

 

[trying ungracefully]

For me it's mania and psychosis. It's terrifying and it's like I'm a different person but it's me so it's scary. I hurt the people I loved so badly and embarrassed myself in public so much and had police intervention a few times. I also had to go to inpatient four times last year when I got diagnosed The staying up for days also sucked. I could feel my body being so tired at moments but my mind wouldn't let me sleep. Songs kept replying in my head to the point it felt like that one SpongeBob episode of him having an ear worm who'd play music driving him crazy, it wasn't fun. I also tried to kill myself because I thought people were watching me and hacking into my phone even though I have nothing to be worried about for real. I thought I was in a simulation and had a brain chip. I can go on with so much.

Funny thing from it though. I thought if I fell asleep I was going to be taken and started in a new body as Elon Musks wife. I was terrified and you can imagine that made sleep even more impossible.

 

[calebzz1]

I'm trans. Just existing feels like I'm stuck in a house of mirrors of my own identity. Aside from that, for a while I had a nasty skin condition that would cause frequent boils, cysts, abscesses, and carbuncles to appear all over my body. It was extremely disfiguring and painful, and most severe on my face. I have since seen a massive reduction in them as my HRT has slowed my body hair growth (the growths always resulted from infected hair follicles), and I have gotten laser hair reduction on my face which has eradicated them. I still suffer from the mental anguish of being trapped in a body I am not aligned with.

Other than that, I probably have some kinda of post-traumatic stress from my upbringing as I was both physically and emotionally abused, as well as inappropriately touched at times. Honestly though, the trans thing has taken more of a toll on me than anything else.

That sounds awful, I couldn't even imagine what it is like to be trans and how one would battle with their identity daily.

I will be honest and state that I was raised to be transphobic and skeptical but I have changed my ways.

The skin condiiton you described made my nose itch, I am a visual learner and imagined all of it.

I can relate to to that, developed seborrheic dermatitis on my scalp and face at 19 that I'm still currently trying to actively treat but it is up and down.

I also dealt with a brutal condition called lichen simplex chronicus on my rectal area which was awful, had to work so hard in order for that to improve.

I had a biopsy done which revealed it, remember vividly trying all these creams and ointments desperate for relief.

I was even considering injecting methelyne blue as a consideration but thankfully backed out.

I couldn't use toiler paper, even wet wipes were causing issues too.

I was so scared to wipe and see if there was blood or not, the area would get super itchy and I thought it was permanent.

I'm happy to say that the condition is much better now, I just use a travel bidet and pat with toilet paper.

I hope that section was not too much but just wanted to share what I struggled with and am an open book.

I also cleaned up my diet although that needs work.

Yeah, I can imagine how traumatic that would be.

I'm sorry to hear about all that abuse, sounds terrible.

I'm trans. Just existing feels like I'm stuck in a house of mirrors of my own identity. Aside from that, for a while I had a nasty skin condition that would cause frequent boils, cysts, abscesses, and carbuncles to appear all over my body. It was extremely disfiguring and painful, and most severe on my face. I have since seen a massive reduction in them as my HRT has slowed my body hair growth (the growths always resulted from infected hair follicles), and I have gotten laser hair reduction on my face which has eradicated them. I still suffer from the mental anguish of being trapped in a body I am not aligned with.

Other than that, I probably have some kinda of post-traumatic stress from my upbringing as I was both physically and emotionally abused, as well as inappropriately touched at times. Honestly though, the trans thing has taken more of a toll on me than anything else.

The anxiety attached to it all. Even when literally anything gets better all I can think about it when I'll get worse again, making it so that it never actually gets better LOL

Yeah I understand that, I always wonder all the time when my condition will get better and can never fully relax so to speak.

I don't think my double vision will get worse but we'll see.

For me it's mania and psychosis. It's terrifying and it's like I'm a different person but it's me so it's scary. I hurt the people I loved so badly and embarrassed myself in public so much and had police intervention a few times. I also had to go to inpatient four times last year when I got diagnosed The staying up for days also sucked. I could feel my body being so tired at moments but my mind wouldn't let me sleep. Songs kept replying in my head to the point it felt like that one SpongeBob episode of him having an ear worm who'd play music driving him crazy, it wasn't fun. I also tried to kill myself because I thought people were watching me and hacking into my phone even though I have nothing to be worried about for real. I thought I was in a simulation and had a brain chip. I can go on with so much.

Funny thing from it though. I thought if I fell asleep I was going to be taken and started in a new body as Elon Musks wife. I was terrified and you can imagine that made sleep even more impossible.

That sounds terrifying and I couldn't imagine having those mental health conditions.

I feel like a different person without my aid, just cold and pragmatic.

I don't care about talking for hours if someone can't help.

I would never hurt anyone in my state, joke around with my mom that I can't even throw a punch but it's true without my aid.

A lot of my life is moment to moment making sure I don't fall.

 

[SadGirl]

Hello all, just wanted to start a discussion on something that has been on my mind lately.

"What is the hardest aspect of your physical or mental health condition, if you have one?"

For myself, I do not have any mental health conditions but a pretty brutal visual impairment.

I suffer from severe, intermittent horizontal double vision that is highly variable in nature and I'm barely functional overall.

The hardest aspect for my situation is having to mourn my old hobbies such as reading books, playing videogames, watching movies and television.

This affects so much, from relating to others and more.

My personality is also changed, without my aid I am cold and pragmatic.

I just want a cure and care about little else but it is purely altruistic in nature.

If everything goes back to normal, I can continue working, enjoying old hobbies, go back to community college, continue learning how to drive and more.

The possiiblities are endless and I can help a lot more people which is why I'm so focused on this situation.

That's a luxury now and I don't even know what it's like to see single in both eyes, I get "fusion" moments where my muscles work hard enough and I can "will" my eyes to be straight but it's few and far between.

I am a fall risk, live "moment to moment" as I tell providers because my vision doubles in and out like an accordion all day, everyday.

I only get a break when closing an eye or wearing my patch.

Honestly, it gets so bad I have to decide which object is which and I feel like I'm in a survival horror game sometimes.

I swear it affects a person's cognition, speech, movement and everything but the MRI/MRA was clear.

I still can't believe that based off what I go through.

I don't get headaches or pain which makes sense at least.

I also wanted to touch on this point, people don't always understand the extent of my impairment as well and are not empathetic.

I'll list two situations.

For the first one, I decided to head to my local UPS store to ship my frames back since my mom was in the hospital.

Everything was fine, had to bring my translucent patch but it's very finicky and I had to hold it with a binder clip, later found out that I could have tied it up but that was after the fact.

Anyways, on the way back it was super hot outside and I didn't have my bifocals as I just shipped them back.

I knew this, but had to put my phone at arm's length just to see it and was able to call my Uber.

A woman near my location was loudly talking about purchasing condos and just seemed out of touch in general.

Another dude was just sitting there chilling.

Of course, no one bothered to assist.

Anywho, it was like having low vision and I barely saw the white blur of the car.

Thankfully, I made it home safely while hobbling with my wooden cane of course to and fro.

The whole experience was a lot and it demonstrated how impairment makes everything harder across the board.

Next, this is the second situation.

I decided to check the mail yesterday and there was a worker sifting through everything of course.

I asked politely if I could access the mail box as he wasn't near it.

I was clearly struggling to find what key to use as I rarely go out and he didn't even offter to help or anything.

After this, the man gives a look like I was bothering him even though I'm the impaired one.

Homeboy looked like a typical silver fox (gross) complete with being buff and had tattoos.

I thought about saying sorry and expressing that I'm visually impaired but I really don't owe anyone anything in my state.

That interaction was super annoying looking back.

I'm not a people pleaser anymore which is what I realized from the situation and how I reacted.

Anyways, I had to tell my friends recently again what was going on because they think there's an immediate cure to my situation and I can do everything like nothing happened.

One of them kept pinging in our Discord server to play this game I really wanted to try, Sons of the Forest in particular.

He didn't really know how serious the situation is, I've just been dealing with triggers like that and it's just difficult knowing I can't do all of those hobbies anymore.

I struggle so much daily.

I was recently told I have to be half-blind and alternate with either a 0.2 Bangerter foil (special medical patch) or contact paper for a whole year.

This is the only way I can be cured and my spasm alleviated.

I've worked so hard for alternatives which is already explained in my introduction post.

What's ironic is that even though I'm on this site, I have no history of mental health conditions and will not CTB unless the condition becomes permanent.

I try to think broad and be grateful that I can see clearly even with the aid of a drop and people have it much worse.

For example, there's a little girl who is blind that I always see on Facebook but she is always super positive.

Her faith is really strong in the Lord and she is always happy despite her circumstances of being functionally blind at a young age.

I need to get like that but it's hard.

I know that one day everything will be cured but I don't know when.

The whole situation boggles my mind that I have to work so hard for something that should be given, honestly.

I just hate the feeling of not being able to do what I want to do on a given day, it's very annoying but at least I've gained a lot of empathy for people who deal with visual impairment.

I hope you are all having a great day, thankfully I will be able to make a lot of progress next month but July has been dragging after my mom pulled her stunt.

I lost a lot of trust in her after that and just would rather live alone, it's enough just dealing with my impairment on a daily basis.

I have generalized anxiety disorder, bipolar disorder, ADHD, and severe depression (among other psychological issues). ADHD is especially important, but all of these disorders are difficult to deal with, and they don't stop, they don't leave your mind, they don't give you a break. You live with them 24/7. I have many anxiety attacks, and I won't go into detail about the times I've had outbursts of anger, depression, compulsion, etc. But diplopia isn't a disease in itself, but a symptom of something affecting the alignment or function of your eyes, and it can be cured. Go after it and move on with your life with wisdom and happiness.

 

[beandigger404]

Self-harm. Being mentally ill is bad enough, but being hooked on self-destruction just makes it 1000x more unbearable. Most humiliating and debilitating crap on the planet. Always striving to cut deeper with no satisfaction no matter how far I take it. Just the endless search for validation and being 'sick enough". My bathroom smells like rot and decay because I hoard blood-soaked gauze and keep bottles of my blood and flesh. I wish I never started. I can't stop. My brain tells me I deserve this and that I must destroy myself, plus I get withdraws and have no other way to feel somewhat normal emotionally. I'm disgusting and rancid.

 

[calebzz1]

I have generalized anxiety disorder, bipolar disorder, ADHD, and severe depression (among other psychological issues). ADHD is especially important, but all of these disorders are difficult to deal with, and they don't stop, they don't leave your mind, they don't give you a break. You live with them 24/7. I have many anxiety attacks, and I won't go into detail about the times I've had outbursts of anger, depression, compulsion, etc. But diplopia isn't a disease in itself, but a symptom of something affecting the alignment or function of your eyes, and it can be cured. Go after it and move on with your life with wisdom and happiness.

I'm sorry to hear this and I couldn't even imagine being in that place mentally.

Thank you very much, everyday I'm glad that my condition is curable and I even had a lot of "fusion" moments today.

I hope your situation gets better though.

Self-harm. Being mentally ill is bad enough, but being hooked on self-destruction just makes it 1000x more unbearable. Most humiliating and debilitating crap on the planet. Always striving to cut deeper with no satisfaction no matter how far I take it. Just the endless search for validation and being 'sick enough". My bathroom smells like rot and decay because I hoard blood-soaked gauze and keep bottles of my blood and flesh. I wish I never started. I can't stop. My brain tells me I deserve this and that I must destroy myself, plus I get withdraws and have no other way to feel somewhat normal emotionally. I'm disgusting and rancid.

I'm so sorry and honestly speechless.

I'm a visual learner and literally imagine everything I read which lead to a huge pit forming in my stomach.

I want to hug you so bad right now through my monitor as this really hurt to read.

There was a scene in 13 Reasons Why that was cut out and it alone always dissuaded myself from ever self-harming.

The scene was so raw and real.

I was transfixed and couldn't look away.

Feel free to reach out if you ever need any help or want to vent.

 

[SadGirl]

I'm a nurse and I know this symptom can be cured. Don't worry, it will pass, you'll see. The hardest part is curing mental disorders that don't even have a cure.

 

[calebzz1]

I'm a nurse and I know this symptom can be cured. Don't worry, it will pass, you'll see. The hardest part is curing mental disorders that don't even have a cure.

Thanks for the reassurance, that means a lot!

 

[sinnamonbun]

I suffer from CPTSD and it makes dealing with conflict so hard. Anyone raising their voice at me or showing a slight shift in mood can set me off into a crying fit or me shaking in fear. It is such a pain to deal with

 

[Hollowman]

Knowing it's impossible to be the person I could've been and not having the life I could've had.

 

[calebzz1]

I suffer from CPTSD and it makes dealing with conflict so hard. Anyone raising their voice at me or showing a slight shift in mood can set me off into a crying fit or me shaking in fear. It is such a pain to deal with

That sounds awful.

I probably have some trauma after surgery because whenever an eyecare provider brings something close to my eye I shake a lot.

One ophthalmologist measured my corneal sensitivity and she had this device that looked like a pipe clearner.

I squirmed around and was shaking because I think I'm being forced into another surgery or something like that.

I feel like I can't take life seriously without my aid because literally everything doubles in and out like an accordion.

I have to be so careful with my movement.

I'm kind of the opposite and I just want someone to help straight up.

I get upset when I know a person can't assist, it's irrational and I'm working on iy but that's simply my attitude without wearing a patch.

My personality turns cold and pragmatic quick.

Knowing it's impossible to be the person I could've been and not having the life I could've had.

Yeah that's an awful feeling, can't believe I'm really facing disability at 25 due to my impairment even though it's temporary.

I have to put my life on hiatus for at least a year but honestly I think this condition is more permanent and something seems off.

It's so strange being a young man and all of the providers you have seen that are relevant for the most part all conclude that you can't work or continue to learn how to drive.

The only difference between last May and now is that I can see clearly but only with the aid of a drop that is not good to use long-term.

I still have double vision every time I take a step with both eyes.

 

[Celerity]

Hello all, just wanted to start a discussion on something that has been on my mind lately.

"What is the hardest aspect of your physical or mental health condition, if you have one?"

For myself, I do not have any mental health conditions but a pretty brutal visual impairment.

I suffer from severe, intermittent horizontal double vision that is highly variable in nature and I'm barely functional overall.

The hardest aspect for my situation is having to mourn my old hobbies such as reading books, playing videogames, watching movies and television.

This affects so much, from relating to others and more.

My personality is also changed, without my aid I am cold and pragmatic.

I just want a cure and care about little else but it is purely altruistic in nature.

If everything goes back to normal, I can continue working, enjoying old hobbies, go back to community college, continue learning how to drive and more.

The possiiblities are endless and I can help a lot more people which is why I'm so focused on this situation.

That's a luxury now and I don't even know what it's like to see single in both eyes, I get "fusion" moments where my muscles work hard enough and I can "will" my eyes to be straight but it's few and far between.

I am a fall risk, live "moment to moment" as I tell providers because my vision doubles in and out like an accordion all day, everyday.

I only get a break when closing an eye or wearing my patch.

Honestly, it gets so bad I have to decide which object is which and I feel like I'm in a survival horror game sometimes.

I swear it affects a person's cognition, speech, movement and everything but the MRI/MRA was clear.

I still can't believe that based off what I go through.

I don't get headaches or pain which makes sense at least.

I also wanted to touch on this point, people don't always understand the extent of my impairment as well and are not empathetic.

I'll list two situations.

For the first one, I decided to head to my local UPS store to ship my frames back since my mom was in the hospital.

Everything was fine, had to bring my translucent patch but it's very finicky and I had to hold it with a binder clip, later found out that I could have tied it up but that was after the fact.

Anyways, on the way back it was super hot outside and I didn't have my bifocals as I just shipped them back.

I knew this, but had to put my phone at arm's length just to see it and was able to call my Uber.

A woman near my location was loudly talking about purchasing condos and just seemed out of touch in general.

Another dude was just sitting there chilling.

Of course, no one bothered to assist.

Anywho, it was like having low vision and I barely saw the white blur of the car.

Thankfully, I made it home safely while hobbling with my wooden cane of course to and fro.

The whole experience was a lot and it demonstrated how impairment makes everything harder across the board.

Next, this is the second situation.

I decided to check the mail yesterday and there was a worker sifting through everything of course.

I asked politely if I could access the mail box as he wasn't near it.

I was clearly struggling to find what key to use as I rarely go out and he didn't even offter to help or anything.

After this, the man gives a look like I was bothering him even though I'm the impaired one.

Homeboy looked like a typical silver fox (gross) complete with being buff and had tattoos.

I thought about saying sorry and expressing that I'm visually impaired but I really don't owe anyone anything in my state.

That interaction was super annoying looking back.

I'm not a people pleaser anymore which is what I realized from the situation and how I reacted.

Anyways, I had to tell my friends recently again what was going on because they think there's an immediate cure to my situation and I can do everything like nothing happened.

One of them kept pinging in our Discord server to play this game I really wanted to try, Sons of the Forest in particular.

He didn't really know how serious the situation is, I've just been dealing with triggers like that and it's just difficult knowing I can't do all of those hobbies anymore.

I struggle so much daily.

I was recently told I have to be half-blind and alternate with either a 0.2 Bangerter foil (special medical patch) or contact paper for a whole year.

This is the only way I can be cured and my spasm alleviated.

I've worked so hard for alternatives which is already explained in my introduction post.

What's ironic is that even though I'm on this site, I have no history of mental health conditions and will not CTB unless the condition becomes permanent.

I try to think broad and be grateful that I can see clearly even with the aid of a drop and people have it much worse.

For example, there's a little girl who is blind that I always see on Facebook but she is always super positive.

Her faith is really strong in the Lord and she is always happy despite her circumstances of being functionally blind at a young age.

I need to get like that but it's hard.

I know that one day everything will be cured but I don't know when.

The whole situation boggles my mind that I have to work so hard for something that should be given, honestly.

I just hate the feeling of not being able to do what I want to do on a given day, it's very annoying but at least I've gained a lot of empathy for people who deal with visual impairment.

I hope you are all having a great day, thankfully I will be able to make a lot of progress next month but July has been dragging after my mom pulled her stunt.

I lost a lot of trust in her after that and just would rather live alone, it's enough just dealing with my impairment on a daily basis.

I'm really sorry people aren't more accommodating. Folks are so impatient and won't be inconvenienced even for a moment by somebody in need. It sucks. I don't envy your situation at all, and I hope you are able to get better as soon as possible.

I've had GERD for most of my life and have developed some joint pains but nothing so serious that it affects my daily life.

My real problems are all mental. I am too quick to take offense and have a temper. It's gotten much better over the years but, in a way, it makes it more unpredictable. I'll be moving along fine until it sneaks up on me again. It makes it difficult for me to make and keep relationships with people. Then again, I see many people who are much, much angrier than I maintain them, so that can't be the sole reason.

All in all, it can't be helped that I always feel like the outsider looking in. I blend in now for the most part as an adult, but the feeling of otherness has never abated, and I don't expect at this point that it ever will.

 

[qualityOV3Rquantity]

T

Hello all, just wanted to start a discussion on something that has been on my mind lately.

"What is the hardest aspect of your physical or mental health condition, if you have one?"

For myself, I do not have any mental health conditions but a pretty brutal visual impairment.

I suffer from severe, intermittent horizontal double vision that is highly variable in nature and I'm barely functional overall.

The hardest aspect for my situation is having to mourn my old hobbies such as reading books, playing videogames, watching movies and television.

This affects so much, from relating to others and more.

My personality is also changed, without my aid I am cold and pragmatic.

I just want a cure and care about little else but it is purely altruistic in nature.

If everything goes back to normal, I can continue working, enjoying old hobbies, go back to community college, continue learning how to drive and more.

The possiiblities are endless and I can help a lot more people which is why I'm so focused on this situation.

That's a luxury now and I don't even know what it's like to see single in both eyes, I get "fusion" moments where my muscles work hard enough and I can "will" my eyes to be straight but it's few and far between.

I am a fall risk, live "moment to moment" as I tell providers because my vision doubles in and out like an accordion all day, everyday.

I only get a break when closing an eye or wearing my patch.

Honestly, it gets so bad I have to decide which object is which and I feel like I'm in a survival horror game sometimes.

I swear it affects a person's cognition, speech, movement and everything but the MRI/MRA was clear.

I still can't believe that based off what I go through.

I don't get headaches or pain which makes sense at least.

I also wanted to touch on this point, people don't always understand the extent of my impairment as well and are not empathetic.

I'll list two situations.

For the first one, I decided to head to my local UPS store to ship my frames back since my mom was in the hospital.

Everything was fine, had to bring my translucent patch but it's very finicky and I had to hold it with a binder clip, later found out that I could have tied it up but that was after the fact.

Anyways, on the way back it was super hot outside and I didn't have my bifocals as I just shipped them back.

I knew this, but had to put my phone at arm's length just to see it and was able to call my Uber.

A woman near my location was loudly talking about purchasing condos and just seemed out of touch in general.

Another dude was just sitting there chilling.

Of course, no one bothered to assist.

Anywho, it was like having low vision and I barely saw the white blur of the car.

Thankfully, I made it home safely while hobbling with my wooden cane of course to and fro.

The whole experience was a lot and it demonstrated how impairment makes everything harder across the board.

Next, this is the second situation.

I decided to check the mail yesterday and there was a worker sifting through everything of course.

I asked politely if I could access the mail box as he wasn't near it.

I was clearly struggling to find what key to use as I rarely go out and he didn't even offter to help or anything.

After this, the man gives a look like I was bothering him even though I'm the impaired one.

Homeboy looked like a typical silver fox (gross) complete with being buff and had tattoos.

I thought about saying sorry and expressing that I'm visually impaired but I really don't owe anyone anything in my state.

That interaction was super annoying looking back.

I'm not a people pleaser anymore which is what I realized from the situation and how I reacted.

Anyways, I had to tell my friends recently again what was going on because they think there's an immediate cure to my situation and I can do everything like nothing happened.

One of them kept pinging in our Discord server to play this game I really wanted to try, Sons of the Forest in particular.

He didn't really know how serious the situation is, I've just been dealing with triggers like that and it's just difficult knowing I can't do all of those hobbies anymore.

I struggle so much daily.

I was recently told I have to be half-blind and alternate with either a 0.2 Bangerter foil (special medical patch) or contact paper for a whole year.

This is the only way I can be cured and my spasm alleviated.

I've worked so hard for alternatives which is already explained in my introduction post.

What's ironic is that even though I'm on this site, I have no history of mental health conditions and will not CTB unless the condition becomes permanent.

I try to think broad and be grateful that I can see clearly even with the aid of a drop and people have it much worse.

For example, there's a little girl who is blind that I always see on Facebook but she is always super positive.

Her faith is really strong in the Lord and she is always happy despite her circumstances of being functionally blind at a young age.

I need to get like that but it's hard.

I know that one day everything will be cured but I don't know when.

The whole situation boggles my mind that I have to work so hard for something that should be given, honestly.

I just hate the feeling of not being able to do what I want to do on a given day, it's very annoying but at least I've gained a lot of empathy for people who deal with visual impairment.

I hope you are all having a great day, thankfully I will be able to make a lot of progress next month but July has been dragging after my mom pulled her stunt.

I lost a lot of trust in her after that and just would rather live alone, it's enough just dealing with my impairment on a daily basis.

That sounds so brutal, I'm sorry you have to deal with this curse. I deal with some chronic health issues but thankfully nothing that actually messes with or reduces my senses. I can't imagine how scary that would be.

 

[calebzz1]

I'm really sorry people aren't more accommodating. Folks are so impatient and won't be inconvenienced even for a moment by somebody in need. It sucks. I don't envy your situation at all, and I hope you are able to get better as soon as possible.

I've had GERD for most of my life and have developed some joint pains but nothing so serious that it affects my daily life.

My real problems are all mental. I am too quick to take offense and have a temper. It's gotten much better over the years but, in a way, it makes it more unpredictable. I'll be moving along fine until it sneaks up on me again. It makes it difficult for me to make and keep relationships with people. Then again, I see many people who are much, much angrier than I maintain them, so that can't be the sole reason.

All in all, it can't be helped that I always feel like the outsider looking in. I blend in now for the most part as an adult, but the feeling of otherness has never abated, and I don't expect at this point that it ever will.

I appreciate that, my condition is temporary but I'm so skeptical of that since the double vision has rarely improved other than having "fusion" moments where if I concentrate enough I can see single but with a lot of strain.

I feel you, my mom is kind of like that as well and gets offended quite easily.

She has no issues talking bad about other people ironically.

Without my aid I don't have a lot of patience and honestly don't like talking for hours unless it can help my situation out, sounds selfish I know but with everything being so much more difficult due to my symptoms it is for an altruistic cause.

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That sounds so brutal, I'm sorry you have to deal with this curse. I deal with some chronic health issues but thankfully nothing that actually messes with or reduces my senses. I can't imagine how scary that would be.

Yeah, it's easily the hardest medical condition I've dealt with in my adult life.

I have no pain thankfully or headaches but without closing an eye or wearing a patch I describe it as "moment to moment" because your vision randomly doubles at any time in an accordion like motion which makes everything a lot more unpredictable.

I'm not scared because I've been dealing with it for so long and I have the emotional maturity to handle everything.

I have my flaws though and have become a lot more stoic and less approachable which is why I have had to put my firends on the side for now.

I can't do what they think I can anymore, had a trigger tonight seeing them play a game I can't due to what I experience, it's just brutal but I think broad and know that one day I'll be cured.

 

[QuincyME]

My problems are two fold: medical/dental and mental health. On the dental side of things, my teeth are a hot mess and the likelihood of them getting repaired is virtually zero. I don't have the money (it would cost a fortune) and I have severe dental phobia and emetophobia which is how my teeth got in the shape they're in. I have a job dealing with the public which causes me me shame and embarrassment.

My mental problems consist of soul crushing depression, anxiety, hopelessness, etc. My depression is situational meaning I brought it all on myself. I destroyed relationships with my family, wife, and child because I'm a selfish pig. These relationships are beyond repair. The regret and shame that I have to live with are devastatingly brutal. I lost a career which I'll never ever be able to get back. I've had to settle for doing a job that has amplified my depression a million fold. There is no way out for me other than death.

 

[gottacheckout]

The hardest part of my condition is the hallucinations. My ocd, anxiety, depression and antisocial parts are difficult but they are not debilitating like a full blown hallucination episode.

 

[calebzz1]

My problems are two fold: medical/dental and mental health. On the dental side of things, my teeth are a hot mess and the likelihood of them getting repaired is virtually zero. I don't have the money (it would cost a fortune) and I have severe dental phobia and emetophobia which is how my teeth got in the shape they're in. I have a job dealing with the public which causes me me shame and embarrassment.

My mental problems consist of soul crushing depression, anxiety, hopelessness, etc. My depression is situational meaning I brought it all on myself. I destroyed relationships with my family, wife, and child because I'm a selfish pig. These relationships are beyond repair. The regret and shame that I have to live with are devastatingly brutal. I lost a career which I'll never ever be able to get back. I've had to settle for doing a job that has amplified my depression a million fold. There is no way out for me other than death.

I'm sorry to hear that, dental issues seem to be the worst which is why I try very hard to take care of mine.

I had a co-worker back in McDonald's who would always complain about the pain and I felt so bad for him.

He would have to put in Orajel during his shifts and it seemed to be a lot to handle.

Personally, I have a crossbite on the left side which is functional but needs to be fixed at some point.

I am waiting on getting disability benefits to tackle it and apply for dental insurance.

I got it checked twice when I was younger, the first time apparently I needed SARPE surgery according to an orthdontist but another one in Maryland was more conservative and explained that I could do Invisalign.

SARPE was very scary, apparently it's very invasive and you need to turn a key on your upper palate.

I was shocked to say the least.

Worst case scenario, I might need to have a few teeth extracted if I chose the latter option.

I just have minor symptoms regarding it, sometimes I accidentally bite my tongue or the inside of my cheek if I'm not careful and I have always had issues with my left ear.

I'm sorry to hear about the situational depression, have no mental health issues myself but I've definitely changed emotionally as a result of my current medical situation.

It's a strange place to be, temporarily disabled at 25 despite taking as much as initiative as I have.

I can relate to being selfish for sure.

Without my aid I only care about a cure but it is purely for an altruistic cause because I know I have a lot of potential.

I definitely regret choosing have my LASIK surgery done everyday, my current issue is no entirely from it but I still think the event caused some damage.

The hardest part of my condition is the hallucinations. My ocd, anxiety, depression and antisocial parts are difficult but they are not debilitating like a full blown hallucination episode.

I'm a visual learner and I could definitely imagine how bad hallucination episodes could be.

I ope that they can be eliminated or reduced in frequency.

The hardest part of my condition is the hallucinations. My ocd, anxiety, depression and antisocial parts are difficult but they are not debilitating like a full blown hallucination episode.

I'm a visual learner and I could definitely imagine how bad hallucination episodes could be.

I ope that they can be eliminated or reduced in frequency.

 

[shampoo sniffer]

I have trauma from severe bullying when I was a child/teen. Not gonna go into details but some of it was sexual in nature.

As a result I can't form relationships with other humans. And I despise my body and I hate being me. I hate being female. If I wasn't female, this wouldn't have happened.

 

[calebzz1]

I have trauma from severe bullying when I was a child/teen. Not gonna go into details but some of it was sexual in nature.

As a result I can't form relationships with other humans. And I despise my body and I hate being me. I hate being female. If I wasn't female, this wouldn't have happened.

I'm very sorry to hear your experience, that sounds awful.

I definitely feel you with the isolation, if my condition is permanent it would be a lot simpler if I do so.

 

[nitrogenous]

Mine would be battling my inner self of wanting to end the suffering vs continuing life and proving that life is worth it. My mental health condition makes it so difficult as I often times become insensible even when theoretically I know what I need to do to make myself feel better. I suppose that is why I'm still waiting to figure out which side of me will win.

 

[maylurker]

"What is the hardest aspect of your physical or mental health condition, if you have one?"

im unable to entertain people properly everyone gets bored of me saying that im negative/dull/sad

 

[calebzz1]

im unable to entertain people properly everyone gets bored of me saying that im negative/dull/sad

I feel you 100%, I'm not a likeable person and don't try to be at this point since I go through so much.

I'm a very pragmatic and practical individual.

I used to be a lot more goofy and carefree but my cirucmstances have changed my attitude greatly unfortunately.

 

[Lookingtoflyfree]

Autism is one of the conditions. There's a reason why the second leading cause of death is unaliving (I suspect the number 1 - drowning - is part of that too). And there's a reason why our life expectancy is 55. Our brains are at war with us and the world. I am happy to be planning the ending at last. Freedom....

 

[Arvayn]

I am a diagnosed schizoid. One of the symptoms of my neurology is that I have very low emotional arousability. I am capable of feeling emotions, to their fullest; but actually triggering them is extremely difficult for me. I often have days where I feel completely 'neutral' and devoid of feeling, akin to clinically observing an environment from behind reinforced glass. This does not result in apathy, however. I still have an interest in various activities; it's just that the interest is purely intellectualized.

I do not find my condition to be distressing. I believe it gives me a more peaceful life and a stabler mind than a neurotypical individual. However, it has impacted my relationships. My intellectualization of my interests extends to emotional and social problems. I will fluctuate between having mild emotional care for a partner on one day, and being utterly indifferent to them the next. I will oftentimes treat my friends and partners like phenomena to be analyzed and understood, not out of malice, but out of genuine interest. I have been told that this is a very frustrating behavior to be on the receiving end of, and it has resulted in the destruction of a lot of my relationships.
Worse yet, I will usually find it somewhat distressing in the moment, and do my best to reconcile it... Only to realize, a few days later, that I do not truly mind their disappearance at all. My emotional experiences simply do not last, as much as I'd enjoy them to.

I only have this issue with those who are close to me, since I am good at engaging in social masking with strangers. I also tend to warn people of this when they become close to me; they disregard it, and then they are negatively surprised when it happens.

I don't feel sad over this, but I believe it has caused me to lose opportunities and valuable connections, and it sometimes ends up getting me in trouble, so it is still a problem at the end of the day.

 

[Heraskov]

It feels a bit meager compared to what others have posted about in this thread, but I've struggled greatly with my voice and speaking to other people for much of my life. During puberty, my voice gradually became very deep compared to the rest of my male friends, and while many people compliment me on that these days--saying that it sounds cool or suggesting that I should do some side-gig with narration in the future--that change in my voice's sound also made it very hard for me to speak loudly, and so, overtime, my voice became very quiet, too.

In addition, and separate from that change in sound was a mental problem that began around fifth or sixth grade with cluttering my words and developing this sort of "vocal anxiety" where I wanted to speak as quickly as I could out of a fear that others would misunderstand what I was saying before I was finished talking. I don't know where it came from, but, ever since then, many folks have had trouble understanding all of what I say when I'm talking to them due to me speaking quickly and lacking good enunciation, so I end up having to repeat myself to them, which can sometimes feel a little tedious whenever I think I just did an awesome job saying something on the first try, and now I have to try it again.

Thankfully, I've found that either of these things (volume projection and speech pace/organization) can be improved upon overtime with simple, conscious practice, though it's been much harder for me to improve my volume compared to improving my pace and enunciation, as I'm still hardly ever able to talk very much with those around me in a lot of public environments where noise is present, with even my "shouting voice" only being comparable to the volume of someone else's normal voice. As such, finding a quiet space with a friend (like at a library or out in the woods on a hike) brings me great joy, as I finally get to speak my thoughts without struggle.