psychological problems due to KC????
Moderators: Anne Klepacz, John Smith, Sweet
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Louise Pembroke
- Champion
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- Joined: Sat 21 Aug 2004 11:34 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
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John Smith
- Moderator
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- Keratoconus: Yes, I have KC
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- Location: Sidcup, Kent
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Louise Pembroke
- Champion
- Posts: 1482
- Joined: Sat 21 Aug 2004 11:34 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Hi everyone...
Been caught up in a myriad of things for a while but managed to get back here eventually!
This is an interesting thread and I do think KC ers have a unique problem in that their visual problems can be so variable. One minute you are normally sighted, the next you can't see a thing if your lenses are out. Its hard to adjust to a dual way of seeing.
Couple of things here. There is no reason in this world that you can't take your problems to the Low Vision Clinics based in most hospitals that you visit for your KC. For example, a telescopic aid that slips into your pocket would be great for reading the Liverpool Street boards or even street signs etc. These fit into the palm of your hand and you just peek through it when you need to see detail.
Many Low Vision Depts loan out their equipment, as it is expensive to actually buy. There are other aids such as CCTV cameras connected to a platform on which you can put documents to read. Just because you guys may see some of the time doesn't mean you can't access these aids when you DO need them if you go through a period of not being able to wear lenses etc.
People and organisations will help if they understand the problem. If they are not told, they can't help. So the suggestions here about contacting RNIB are spot on. For example, they DO have telephone support groups for visually impaired people. Visit the site and check out all their services.
RNIB
The badge idea has its plus sides and down sides. Its getting the public to understand what they mean. And you know, deaf people go through much the same sort of aggro - especially those with partial hearing loss because others do not understand about frequencies or the impossibnility of hearing conversation against strong background noise even with hearing aids.
However, the RNIB ARE the ones to ask about this and to help with suggestions or in fact help with a national campaign.
Lynn
Been caught up in a myriad of things for a while but managed to get back here eventually!
This is an interesting thread and I do think KC ers have a unique problem in that their visual problems can be so variable. One minute you are normally sighted, the next you can't see a thing if your lenses are out. Its hard to adjust to a dual way of seeing.
Couple of things here. There is no reason in this world that you can't take your problems to the Low Vision Clinics based in most hospitals that you visit for your KC. For example, a telescopic aid that slips into your pocket would be great for reading the Liverpool Street boards or even street signs etc. These fit into the palm of your hand and you just peek through it when you need to see detail.
Many Low Vision Depts loan out their equipment, as it is expensive to actually buy. There are other aids such as CCTV cameras connected to a platform on which you can put documents to read. Just because you guys may see some of the time doesn't mean you can't access these aids when you DO need them if you go through a period of not being able to wear lenses etc.
People and organisations will help if they understand the problem. If they are not told, they can't help. So the suggestions here about contacting RNIB are spot on. For example, they DO have telephone support groups for visually impaired people. Visit the site and check out all their services.
RNIB
The badge idea has its plus sides and down sides. Its getting the public to understand what they mean. And you know, deaf people go through much the same sort of aggro - especially those with partial hearing loss because others do not understand about frequencies or the impossibnility of hearing conversation against strong background noise even with hearing aids.
However, the RNIB ARE the ones to ask about this and to help with suggestions or in fact help with a national campaign.
Lynn
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Louise Pembroke
- Champion
- Posts: 1482
- Joined: Sat 21 Aug 2004 11:34 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
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Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Lynne
It is really good tos ee you again.
I want to underline what you say about equipment to help people with KC through their ordinary day. I have a litle telescope from the low sight clinic, and a lens tnat sits on top of text that I am reading.
I have a CCTV "reader" that gives me text on my computer screen.
It is absolutely the case that KC has a psychological impact on each of us, and that this impact is the more difficult because it is unpredictable, but it is also the case that with help we can mittigate the worst effects of the physical symptoms and therefore help to manage the psychological effects.
There is another line of enquiry
http://www.ajp.psychiatryonline.org/cgi ... 160/5/1011
I reckon that this might merit some sort of leaflet, and would encourage the committee to put this on the agenda for a future meeting. Even if rare the possible association of KC with Psychosis ought to be researched.
Andrew
It is really good tos ee you again.
I want to underline what you say about equipment to help people with KC through their ordinary day. I have a litle telescope from the low sight clinic, and a lens tnat sits on top of text that I am reading.
I have a CCTV "reader" that gives me text on my computer screen.
It is absolutely the case that KC has a psychological impact on each of us, and that this impact is the more difficult because it is unpredictable, but it is also the case that with help we can mittigate the worst effects of the physical symptoms and therefore help to manage the psychological effects.
There is another line of enquiry
http://www.ajp.psychiatryonline.org/cgi ... 160/5/1011
I reckon that this might merit some sort of leaflet, and would encourage the committee to put this on the agenda for a future meeting. Even if rare the possible association of KC with Psychosis ought to be researched.
Andrew
Andrew MacLean
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Hi Andrew!
Nice to be back as well..
Very interesting article is that. Its always hard to know which is cause and effect. Whether a visual problem makes a pre-existing condition worse or whether it is in some way connected genetically. Definitely worth investigation but i guess the problem is getting enough people together for the research.
Seems like the committee have their hands full with suggestions!
Nice to be back as well..
Very interesting article is that. Its always hard to know which is cause and effect. Whether a visual problem makes a pre-existing condition worse or whether it is in some way connected genetically. Definitely worth investigation but i guess the problem is getting enough people together for the research.
Seems like the committee have their hands full with suggestions!
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Louise Pembroke
- Champion
- Posts: 1482
- Joined: Sat 21 Aug 2004 11:34 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
I would personally prefer to see more practical things explored as in equipment/badges/education of people without KC.
I looked at the paper and I think the line of argument is spurious especially bearing in mind that psychiatry has been looking for the "Schizophrenic gene" for a very long time now and there's plenty of research to show that difficult social circumstances and trauma [in the widest sense of the word], responses from others and social networks have a far greater bearing than genetics in becoming distressed in a way that becomes diagnosable. The person in question had also taken mind altering drugs which muddies the picture, then there are MRI scan studies showing that even short term adminstration of the so-called "antipsychotic" drugs result in changes to brain structure and volume [therefore iatrogenic]. Another school of thought is that antipsychotics cause dopamine supersensitivity, as opposed to the 'condition' causing it.
Schizophrenia as a brain disease is hotly contested now, in Japan they have abolished the use of the term and there is a campaign here to do similar [CASL at Manchester University] which I support. The evidence supporting a biological basis is very weak and is increasingly being pulled apart by critical thinkers within and outside of psychiatry.
Of course developing KC could be classed as a life trauma but sadly the mental health system offers the same response to most people no matter what has occured in their lives and whatever they present with - drugs and/or behavioural approaches [CBT, DBT, Modification].
Developing KC with it's rapid deterioration and complications certainly compounded my distress as a teenager, and then I was deemed to be Schizophrenic at 19. However, by this point, it was the responses from the medical profession itself that made me more "ill" than anything else. The consultant ophthamologist made me wait 2 years longer than what I should have for my first graft because I was "that girl", the loony, and he didn't like loonies. His moral judgement was not informed by a single conversation with me, my GP, a consultant, noone. It was the lens nurse who spent a whole year persuading him to see me as the lens clinic didn't know how I was coping.
It was obvious I couldn't see very well on the psych ward reading a paper 2 inches away from my face, yet I never had a single conversation with a mental health professional about my sight. It cost me my career as a dancer which requires good sight, and then of course, schools were not interested if a student was impaired at all because we were disposable. My depression nose dived with each deterioration in my sight, it was only the contact lens nurse who truly understood the impact on me and how A&E staff across the road made matters even worse by shouting at me and ridiculing me whenever I attended with self-harm, often quite serious injuries where I couldn't really see where I was cutting.
I offer the briefest snapshot of one part of my experience as an example of how lack of support turns a crisis into a disaster. Addressing support issues and how society responds to distress labelled as mental illness to me is more useful than looking for KC-Psychosis links. The response to 'psychosis' is pretty much the same whatever the cause is thought to be - medication with unpleasant effects.
There are networks offering alternative non-medical approaches now which is one of the bright shining lights for me.
I don't believe KC caused me to become "Schizophrenic" but it was a significant trauma along with other social difficulties which were never addressed in a meaningful and practical way. My path may have been significantly easier if it had been and that's where the real research lies.
I looked at the paper and I think the line of argument is spurious especially bearing in mind that psychiatry has been looking for the "Schizophrenic gene" for a very long time now and there's plenty of research to show that difficult social circumstances and trauma [in the widest sense of the word], responses from others and social networks have a far greater bearing than genetics in becoming distressed in a way that becomes diagnosable. The person in question had also taken mind altering drugs which muddies the picture, then there are MRI scan studies showing that even short term adminstration of the so-called "antipsychotic" drugs result in changes to brain structure and volume [therefore iatrogenic]. Another school of thought is that antipsychotics cause dopamine supersensitivity, as opposed to the 'condition' causing it.
Schizophrenia as a brain disease is hotly contested now, in Japan they have abolished the use of the term and there is a campaign here to do similar [CASL at Manchester University] which I support. The evidence supporting a biological basis is very weak and is increasingly being pulled apart by critical thinkers within and outside of psychiatry.
Of course developing KC could be classed as a life trauma but sadly the mental health system offers the same response to most people no matter what has occured in their lives and whatever they present with - drugs and/or behavioural approaches [CBT, DBT, Modification].
Developing KC with it's rapid deterioration and complications certainly compounded my distress as a teenager, and then I was deemed to be Schizophrenic at 19. However, by this point, it was the responses from the medical profession itself that made me more "ill" than anything else. The consultant ophthamologist made me wait 2 years longer than what I should have for my first graft because I was "that girl", the loony, and he didn't like loonies. His moral judgement was not informed by a single conversation with me, my GP, a consultant, noone. It was the lens nurse who spent a whole year persuading him to see me as the lens clinic didn't know how I was coping.
It was obvious I couldn't see very well on the psych ward reading a paper 2 inches away from my face, yet I never had a single conversation with a mental health professional about my sight. It cost me my career as a dancer which requires good sight, and then of course, schools were not interested if a student was impaired at all because we were disposable. My depression nose dived with each deterioration in my sight, it was only the contact lens nurse who truly understood the impact on me and how A&E staff across the road made matters even worse by shouting at me and ridiculing me whenever I attended with self-harm, often quite serious injuries where I couldn't really see where I was cutting.
I offer the briefest snapshot of one part of my experience as an example of how lack of support turns a crisis into a disaster. Addressing support issues and how society responds to distress labelled as mental illness to me is more useful than looking for KC-Psychosis links. The response to 'psychosis' is pretty much the same whatever the cause is thought to be - medication with unpleasant effects.
There are networks offering alternative non-medical approaches now which is one of the bright shining lights for me.
I don't believe KC caused me to become "Schizophrenic" but it was a significant trauma along with other social difficulties which were never addressed in a meaningful and practical way. My path may have been significantly easier if it had been and that's where the real research lies.
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]
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Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Louise
Thank you for sharing this with us.
I think that, like you, I am predisposed to look for environmental rather than genetic factors in the development of responses to the real world. I would rather look at "nurture" than try to explain things by "nature"; partly because the nurture side of the equation is wonderfully empowering.
If things happen because of nature then we are powerless pawns. If they happen because of nurture then we are able to intervene and influence outcomes.
I did not offer the link because I think that there is a genetic link between psychosis and keratoconus, but because, as you say, "developing KC could be classed as a life trauma": a trauma that impacts on the lives of us all.
I really do think that this string has opened an area of discussion that we need to address and a whole raft of experiences to which we ought to be willing to respond.
Always fighting, sometimes winning.
All the best
Andrew
Thank you for sharing this with us.
I think that, like you, I am predisposed to look for environmental rather than genetic factors in the development of responses to the real world. I would rather look at "nurture" than try to explain things by "nature"; partly because the nurture side of the equation is wonderfully empowering.
If things happen because of nature then we are powerless pawns. If they happen because of nurture then we are able to intervene and influence outcomes.
I did not offer the link because I think that there is a genetic link between psychosis and keratoconus, but because, as you say, "developing KC could be classed as a life trauma": a trauma that impacts on the lives of us all.
I really do think that this string has opened an area of discussion that we need to address and a whole raft of experiences to which we ought to be willing to respond.
Always fighting, sometimes winning.
All the best
Andrew
Andrew MacLean
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