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Can anyone help?

N

Nonegiven

New member
Joined
Nov 9, 2019
Messages
2
Location
Australia
I am 21 years old and was born with Retinitis pigmentosa (RP) diagnosed at 5

It currently has no cure and yet every year I'm asked to come back to a eye surgeon... have the same tests done, pay them alot of money for them to tell me what they and I already knew

I'll never get to drive and I was supposed to lose my full sight by now, I can feel it worsening day by day... things getting blurrier, not seeing what I should be able to see

I feel... depressed ? I dont really know if it is. I cross the road based off of hearing and sometimes just wish I got hit.
I'm finding it very difficult to get a job as they are either too far away or require a license despite me having s diploma in IT networking.

Everyone says they understand... everyone says it could be worse, but I feel those words are to make themselves feel better.
When i think about how expansive the universe is i begin to realise how i significant my death would be... but at the same time it's so insignificant it isn't worth actively seeking

Any experiences or advice would be very helpful
I really cant talk to anyone about this, I cant bring myself to do it over the phone let alone face to face

Sorry it's so long, thankyou
 
StarryKnight33

StarryKnight33

Well-known member
Joined
Nov 1, 2019
Messages
92
Location
Uk
I am 21 years old and was born with Retinitis pigmentosa (RP) diagnosed at 5

It currently has no cure and yet every year I'm asked to come back to a eye surgeon... have the same tests done, pay them alot of money for them to tell me what they and I already knew

I'll never get to drive and I was supposed to lose my full sight by now, I can feel it worsening day by day... things getting blurrier, not seeing what I should be able to see

I feel... depressed ? I dont really know if it is. I cross the road based off of hearing and sometimes just wish I got hit.
I'm finding it very difficult to get a job as they are either too far away or require a license despite me having s diploma in IT networking.

Everyone says they understand... everyone says it could be worse, but I feel those words are to make themselves feel better.
When i think about how expansive the universe is i begin to realise how i significant my death would be... but at the same time it's so insignificant it isn't worth actively seeking

Any experiences or advice would be very helpful
I really cant talk to anyone about this, I cant bring myself to do it over the phone let alone face to face

Sorry it's so long, thankyou
I'm so sorry to hear about what you are going through. I don't have any experience with your vision going but I do have anxiety/depression and know the feeling of hopelessness. Here if you want to chat 💜
 
N

Nonegiven

New member
Joined
Nov 9, 2019
Messages
2
Location
Australia
I'm so sorry to hear about what you are going through. I don't have any experience with your vision going but I do have anxiety/depression and know the feeling of hopelessness. Here if you want to chat 💜
Thankyou, I really appreciate it
 
C

carocaro

Member
Joined
Nov 14, 2019
Messages
10
Location
New Orleans
I don't understand personally what you're going through exactly, but a couple years ago I got sick. I saw so many doctors but no one could tell me what was going on. I was nauseous all the time and could barely eat so I basically starved myself for months. Losing so much weight made my body hurt all the time and messed with my sleep. It was actually this experience that made me develop depression in the first place. All I can say is I know how hard medical issues can be. It's not fair and you don't deserve it. It's frustrating to never get the answers you so desperately want. I don't have a solution for you, but just know you've got someone out here thinking of you and sending you love.
 
J

JamFRUK

Active member
Joined
Nov 2, 2019
Messages
29
Location
London
My brother has a rare degenerative optical nerve disease and lost 98% of his sight aged 14, over just a few days. He's so incredibly strong despite that. Every year he also has those tests done (and we siblings are also required to check up in case). He lives a full life, is married, has 2 kids and work in sales despite his disability.
I'm telling you this to let you know there is hope. I can't imagine how I would have survived if that had been me. I struggle with other stuff but I don't have half his mental strength.
All that to tell you, hang in there. I partly know how hard it is (I was the one helping him study, go to school and get around the first few years) but you can and you will live a fulfilling life even if it's harder for you.
Please also if you feel depressed talk to a gp at least. Even if you're unsure about whether you are. Just let them know if you feel low mood. You don't need to go into great detail but feeling distressed shouldn't be overlooked.
 
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