Keratos - European association on ocular surface diseases and lachrymal dysfunctions.    Afficher en Français  Display in English   Acesso ao site em Portugês
Logo: Keratos - Revenir au site, Back to site
News
Presentation of Keratos
Dry Eyes
Ocular Surface Diseases
Ocular Allergies
Invisible Disabilities
Social
Professional
Administrative
Testimonials
Areas of Interest
Actions & Projects
Contacts & Links
Glossary & Diagrams
 

Preserve our Eyes, not our Drops!

 

 

 

 


      

 

Social Invisible Disabilities

Panneau HandicapIt might seem an advantage: Visually, it is virtually impossible to « tell » if a person suffers from a visual impairment or from severe eye pain for that matter. It is, however, easy to notice the disability of a person sitting on a wheelchair or equipped with some kind of visible prosthetic device or even a blind person, whereas pain and visual impairment cannot be perceived by the untrained eye. The obvious advantage being that there is no first-sight discrimination unless the disability becomes more visible…except when a dry eye sufferer has to use drops every 5 minutes.

Nevertheless, this is often a setback and frustrating problem causing of further distress for the individual: as it may be almost impossible to make others understand that “the normal appearance” of a person suffering from severe ocular diseases is completely misleading.

This incapacity to perceive the disease is often a cause of incomprehension even amongst the closest persons or relatives. This is a common characteristic of most chronic diseases which cannot be perceived by others (the visual impairment, physical pain and moral pain is not in “the eye of the beholder" simply looking at it but rather in that of the person suffering from a severe ocular pathology). This is particularly true in a world of deceitful binary misconceptions (good sight vs. blind, whereas visual impairment exists in may degrees or forms; pain acknowledged by physicians vs. psychosomatic interpretations of that pain, when pain can only be perceived subjectively… no matter what doctors may tell you… and, of course, this is not the patient’s fault). The best way to quantify pain sometimes is to listen to the patients symptoms (taking a subjective approach)... take a headache for instance. Most pathologies addressed by Keratos are precisely a combination of a visual impairment with a real physical pain, without excluding moral pain.

Most persons suffering from these diseases carry “the burden of proof” to use a juridical analogy. For instance, they have to justify themselves whenever they need to rest or get way from the others, whenever they need to limit their activities, whenever they need to avoid certain environments likely to worsen their health state. A frequent example: ciagarette smoke in the immediate surroundings of the person suffering from an ocular surface disease or it could be some heated room (artificial heat) and air conditioning. Very often, even close relatives take it quite badly when it is required of them to stop smoking in the presence of the diseased person, asked to reduce heating equipment or air conditioner use.

Hence, it is even more difficult in daily life situations for persons in which a disability is not obvious and with people one does not know: at work or at a restaurant for example. In some cases the use of protective sunglasses is not socially accepted or can be misinterpreted as “showing off”; when worn in places where sunglasses are not usually expected, for example inside buildings, in malls or at work, or school. This type of disease usually ends up forcing their sufferer to become asocial against his will.

Even with physicians or ophthalmologists it is sometimes hard to address the issue of pain and the disability ocular surface diseases causes. OSD not only cause visual impairment but also "ocular pain" disability, teh cornea is the most sensitive tissue of the human body, doctors know it, and yet .... It is fairly easy to explain this fact, since neither pain nor even photophobia can be objectively measured. Furthermore, society as a whole, has just begun to take an interest in pain control while at the same time theories that minimize the impact of pain flourish (everything is psychosomatic, psychological, etc).  Medicine has often had to re-evaluate its subjective considerations on other’s suffering… everyone who’s suffered from severe neuralgias in the past decade knows that. For those who do not suffer from this type of ocular pathology, it is difficult to understand the chronic ocular pain, the fatigue it induces, and the heavy and constant treatments it imposes. The daily impact of this chronic eye pain is not recognised by many ophthalmologists (who believe artificial tears are the answer), this is surprising since our sight is also involved in 80% of our daily tasks.

Thus, we acknowledge that there is a huge challenge ahead of us. One of which is to help society finally recognize that ocular surface diseases are serious disabilities, and have not yet received proper attention. Keratos and its members intend to raise awareness amongst the general public, the medical community, laboratories, governmental and health-related institutions about these distressing conditions on the threshold of both visual impairment and ocular pain disability, which we believe is possible. We are also convinced that measures can be taken to ensure that theses pathologies will receive a better care someday (ex: studies on the impact on the quality of life, by adapting the scales which are use to measure different disabilities and notably the impact of chronic pain and constant stress caused by these pathologies, by inciting laboratories to research dry-eye treatments that go beyond the usual palliative solutions, etc).  

 

Go to International Home - Afficher accueil international

  copyright © Keratos 2005-2007