Emotional and Social Impact
“I plan to live my life to the fullest, challenge myself at every opportunity, never give in, never give up, and always fight for what is right and just. If I do those things I will be successful.
- Rachel Scdoris, Dog Sled Racer
Achromats live in two worlds, a world of impairment triggered by bright light and the world of dimmer light where they can flourish. Thus they may appear at times to function as severely visually impaired and others times seem to function without difficulty.
Because of the rareness of the disease, they also live in a world with little understanding of their condition. Achromatopsia is a rare disease, with perhaps less than 10,000 achromats in the United States, a country of over 300,000,000. This has led most achromats to feel alone in dealing with their vision problems.
Before the development of the Internet, nearly all achromats had never communicated with another achromat with the exception of a sibling who also has the condition. Before the late Frances Futterman with the help of her husband, Mark, developed the Achromatopsia Network, most achromats around the world had never shared their concerns and problems with fellow achromats. Today, the Yahoo Achromatopsia Group plus Facebook sites give achromats a gathering point in cyberspace. Frances Futterman’s two wonderful publications featured the voices of many achromats. Living with Achromatopsia and Understanding and Coping with Achromatopsia have literally become the patient manuals for achromatopsia. The new communication options of the Internet, websites like Achromatopsia.info, Facebook, MySpace, Blogs and Twitter are beginning to connect achromats together and thus lessen the emotional and social impact of this rare condition. See our resource section for links to these other resources.
The Fear of Being Misunderstood
The innate rareness of achromatopsia and the worry of how they will be perceived by others can leave achromats uncertain of which way to present themselves to the world; with their visual problems and adaptations obvious or by hiding all signs that could let others sense they have vision problems. Many elect to hide signs of their vision impairment. This is understandable. Prior mistreatment especially in childhood can leave the achromat fearful of presenting their condition. For some achromats, is easier to hide their vision problems, at least initially, from strangers and sometimes even friends.
Fearing the uncertainty of acceptance and understanding of others may lead achromats to hide their condition. Some achromats may worry about their first impression. They fear they will be stigmatized as “blind”, and be patronized as being so impaired as to require great help, which is not true. And, no one wants to be identified by his or her “condition.” Everyone wants to be known by his or her personal qualities not just by being visually impaired.
"...it can be seen that I often avoid showing my visual handicap and sometimes simulate normal vision. I often experience negative attitudes if I expose my visual disability before people get to know me. The stigma of being partially sighted can be very unpleasant. If I show my handicap to people who do not know me I will be categorized as a disabled person and will be treated in a patronizing way and often not taken seriously. If, on the other hand, I first expose my visualhandicap to people after tehy get to know me, I get fewer such reactions"
Knut Nordby, Vision in a complete achromat: a personal account. Night Vision R.F. Hess, L.T. Sharpe & K. Nordby
Fearing the discovery of their problems, some achromats may find ways to avoid reading, which would be at a very close distance, avoid wearing the dark, often red filtered lenses or using low vision aids. All of which may identify them as visual impaired. This can itself cause further stress from constantly trying to not appear impaired and thus not using the very items that can help them succeed.
They may also then worry that not seeing well enough to acknowledging a friend will make that friend think they are “stuck-up”. And, when they do need some assistance, they may be questioned why they need it. Some achromats worry that the squinting and wearing dark lens inside may make others mistakenly suspect illicit drug use.
“During my high school years I acquired the label of being "aloof" and sometimes even "stuck up" because I did not greet or acknowledge people by name as we passed in the hall …. I forget that people see me a whole lot better than I see them.“
Rachel Scdoris, Dog Sled Racer
Some achromats may also worry that others will mistreat them. This often arises from their treatment during school years. Squinting and blinking, the use of red filtered eyewear and reading close may make children a target of teasing and bullying. They may be taunted unmercifully, particularly in elementary and junior high school. Children may benefit from courses on handling peer pressure and coping with bullies that some schools offer. This mistreatment may make them hesitant to expose their condition to strangers throughout their lives. Some achromats may respond by withdrawing socially, and become more of a loner. Many achromats report they delay exposing their vision problems until they know people better. This is often true in dating.
A more subtle form of mistreatment may come from adults asking: “Why are you reading so close?” “Why don’t you get some better glasses?” “Why are you wearing sunglasses on a cloudy day?” “Why don’t you take off those sunglasses so you can see where you are going?” "Can't you see that color?"
If you are unable to drive, it may be difficult to get to many events. If you cannot see subtle facial expressions or pick up on someone motioning to you across a room, your social interactions may be misinterpreted. You may feel very uneasy about your clothes and physical appearance because of your lack of color vision. The fear of looking impaired may also make you uneasy. Activities in bright sun may leave you feeling impaired and awkward. All of these anxieties impact the ability of achromats to feel comfortable in routine social interaction. Some individuals tend to withdraw, and may become more of a loner, while others can be very active. The different responses may be more about each individual’s personality, support network and early experiences.
Dating and Marriage
The issues of dating and finding a life partner is complex for everyone, and the achromat must again face the issues of how do I present myself to that person. We all feel vulnerability in dating. Will we be accepted or rejected? Some achromats seem to hold back full exposure of their condition until they find there may be some chemistry. Since dating is often at night, achromats can initially function well without exposing their condition. If asked to read a menu, they may ask what’s good, or what is the special and order it rather than demonstrate the need to use a magnifier or hold the menu close.
Another factor that must be dealt with in finding a spouse includes the understanding that the achromat may not be able to drive. The inability for many achromats to drive may be the first point where discussion of the vision problem arises. Men are more likely to have this arise sooner, since in our culture men are more likely to drive on dates. Many blue cone monochromats have enough vision for a standard or restricted driver's license. Complete rod monochromats, however, usually have more vision impairment. Today many rod monochromats can become licensed bioptic drivers.
Most of our success in bioptic driving has come since we began work with red and other filtered soft contact lenses. The contact lenses dramatically improved glare control. Today, we have been successful in helping many achromats to drive with red, magenta or amber filtered contacts and a bioptic system. See our section on bioptic driving or visit our sister website at www.BiopticDrivingUSA.com.
Not every achromat, however, has the ability or desire to drive or lives in a state or country where this is possible. Patients must be highly motivated to go through the rigorous steps to become a bioptic driver. It is a complex process which we discuss in our section on driving on this website.
Another important concern is explaining to the potential spouse and family, the genetic basis of the disease so they will not needlessly and secretly worry about the condition occuring in future offspring. Also they must be reassured that this is a stable condition. No one has ever gone totally blind from achromatopsia.
Marriage should be about sharing responsibilities and finding the roles that each will play in the relationship. Not being able to drive can be overcome by helping out in other ways like doing the laundry or cleaning house for your spouse.
"In the depth of winter I finally learned that
there was in me an invincible summer".
- Albert Camus, 1913-1960 French Novelist
At times in life many individuals with or without a visual impairment may feel that they do not fit in or feel they cannot attain their wanted goals in life. Any of us may experience bouts of depression. One should never hesitate to seek mental health services in these cases.
Additionally, being part of a support group can help. The Internet support may come from places such as the Yahoo Achromatopsia Group, BCMFamilies, and Facebook sites. There are support groups in most large cities for the visually impaired. Though these groups may not have other achromats, other visually impaired patients experience many of the same issues.
"Go confidently in the direction of your dreams. Live the
life you have imagined."
- Henry David Thoreau