VisionAware

by the VisionAware Peer Advisors

Visiting An Eye Care Specialist: the Basics

Visiting an eye care specialist can be stressful. All of us have concerns about going to the eye doctor – and even more so if we have reason for concern. That said, we would like to pass along the following suggestions that we have learned through our own collective personal experiences:

• Take along someone you trust who can listen and ask questions. Sometimes you are so distressed by the diagnosis that you stop listening because you are upset.
• Come armed with your own questions. The more questions you ask, the more informed you will be.
• Ask if you can record the visit. The amount of new information can be overwhelming and this allows you to digest it in your own time.
• Be assertive. Busy eye care specialists have many patients and sometimes do not get back to you with results in a timely way. Waiting can make you feel unimportant – and even angry. So keep your cool and call them.

• Be involved in scheduling. Regular appointments and testing are often a part of diagnosing and tracking the progress of an eye condition. Ask for these to be scheduled together if possible and make sure the results of the test are ready when you go for your specialist appointment. Information can get lost between doctors’ offices and labs.
• Be prepared for having drops put into your eyes. This can be frightening and uncomfortable if you have never had this done before. Also ask what the drops are for and what side effects to expect, such as tears, blurry vision, and sensitivity to glare.
• Educate yourself on your eye condition. Gather information on your eye condition from reputable sources and investigate options for treatment. Build your knowledge base so you can ask good questions and make informed decisions. When you find something that rings true, ask your doctor about it to clarify it or look into it further.
• You are still you. Remember, you are still the person who walked into that appointment, even if you leave with news of permanent visual impairment. With the proper tools, training, and resources, you can continue to live a productive and meaningful life.
• Advocate for yourself. Sometimes there are no effective treatments for your eye condition and you may feel frightened or angry. Try to harness this emotional energy for problem-solving and self-advocacy efforts to address your immediate needs.

The Eye Care Specialist Visit

• Ask for privacy. If you are given assistance to fill out forms requiring confidential information, ask for a room or space where this can be done privately.
• Plan for a long wait time. Be aware that the process of receiving a full diagnosis can require many tests and multiple visits. Appointments are often lengthy and fatiguing. Expect long waits, and plan accordingly.
• Manage your wait time. To occupy your mind while waiting for your turn, consider taking along calm music and headphones or an audio book. Distractions like these can help you manage the wait time and anxiety.

• Expect to have your eyes dilated. Almost always your eyes will be dilated, through the use of eye drops, for a thorough, comprehensive eye exam. This means you will probably experience increased glare, some discomfort, and blurred vision. Bring your favorite sunglasses for comfort.
• Expect and understand matter-of-factness. Eye care specialists have valuable expertise and are great with scientific knowledge, but their bedside manners may require a kinder touch. Often, these specialists work in large, busy practices and research centers. Just be aware that some doctors are more matter-of-fact than friendly. That doesn’t mean they don’t care.
• Seek out support. It may take a while to diagnose your condition. Since you may have to go through many specialists to get a definitive diagnosis, you may need to find a way to cope with the “not knowing.” You may need a source of emotional support outside your family, such as a counselor or support group, or a family doctor with whom you have a comfort level.
• Ask for timelines. Ask for estimated timelines for the progression of your condition and what to expect. If you have a degenerative eye disease, keep in mind that your vision loss may not be total and may progress gradually. You may have many years of usable vision that remain and you will have time to adapt and make adjustments.
• Ask for explanations. Ask the doctor to explain the pattern of vision loss you are experiencing and what the tests measure so you can discuss the implications of your eye disorder. Ask specifically whether you can drive safely and whether you are considered legally blind according to your test results.
• Ask for assistance. The staff in the doctor’s office may not realize you need help navigating around the office. Don’t be afraid to ask for an elbow or assistance to the rest room. Here is some information you can share about interacting with a person with vision loss.

After the Visit Is Completed

• Do your own research. Once you have a diagnosis, it is a good idea to do your own research before your next visit so that you can ask specific questions related to your eye condition and treatment.
• Use reliable information. Remember that not everything you read on the Internet is based in fact, so make sure you use reliable sources of information and validate it through nationally respected websites such as VisionAware, the National Eye Institute, and EyeSmart, the American Academy of Ophthalmology patient information website.
• Be your own advocate You may find it necessary to advocate for a treatment you need with your insurance company or doctor. Remember, it is your vision and you have a right to advocate for yourself. Be an informed advocate.
• Investigate treatment options. Treatment options may include medications, injections, surgery, or the use of low vision optical, non-optical, and electronic devices. Also, you may be eligible to participate in a clinical research trial. Be sure to ask questions about each option that the doctor suggests.
• Keep following up. Your doctor may offer little hope for keeping or restoring your vision. Thus, you may go away without realizing it is still important to be monitored for new symptoms or changes in your vision. There are other conditions to keep a lookout for, such as glaucoma, cataracts, macular degeneration, and diabetic retinopathy, which are treatable. Therefore, ask your doctor about your need for follow up and be sure to keep those appointments. You may also want to seek a second opinion if you still have questions.
• Remember there is life after vision loss. The purpose of VisionAware is to offer you hope, help, and resources to get you started if you are new to vision loss. You may want to read Audrey Demmitt’s article on handling the news, in which she discusses the stages of grief that occur when losing vision.
• Stay connected. Consider getting connected with a vision loss support group, which can play an important role in your adjustment to vision loss.