The Importance of Communicating about Macular Degeneration

“The patient will never care how much you know, until they know how much you care.” – Terry Canale in his American Academy of Orthopaedic Surgeons Vice Presidential Address

Sometimes the breakneck speed of our digital world can make one feel lost. With less face-to-face interaction many rely on the false sense of connection through screen time. These superficial interpersonal habits seem to have crossed over into reality, particularly in communicating with your physician. This can be significantly detrimental when it comes to dealing with diseases such as macular degeneration.

It Takes Two

Doctors are often in a race to rack up as many patients as possible to increase their bottom line. As much as many physicians want to create a personalized approach, it often turns into a quick checkup, a written script and out the door you go. However, it is being shown that a lack of detailed specifics or simple compassionate bedside manners can impede, regress and in some cases increase a patient’s macular degeneration challenge.

It is also just as essential for the patient to communicate their symptoms, questions, concerns, and any other obstacles they may be facing when it comes to their eye disease and possibly their life. A physician can only detect so much if the patient is not specific about their symptoms and struggles.

The importance of communicating about macular degeneration brings to light not only understanding the disease and all its intricacies but reducing the high level of high anxiety and stress that goes along with it.

Careful Counseling

It is a life changing experience when one is diagnosed with macular degeneration and, in the beginning stage, without careful counseling the healing waters can remain murky for years to come.

Recent studies are showing how wet age-related macular degeneration (wAMD), the most common eye disease today, is fraught with fear and depression. Regardless of groundbreaking medical approaches such as vascular endothelial growth factor inhibitors (anti-VEGF), stem cell treatments, and improved anti-inflammatory medicines, patients are still left in the dark when it comes to their psychological health. In many cases this struggle can override technical medical intervention and impede progress.

Researchers at the Manchester Royal Eye Hospital published recent findings in the American Journal of Ophthalmology demonstrating how high levels of anxiety and depression persist in patients with wAMD.

Science Daily reports that,

“The research found as many as 89% of patients who showed anxiety, and 91% who showed depression were not receiving appropriate psychological and psychiatric treatment…This study represents one of the largest and most detailed examinations of patients undergoing anti-VEGF therapy to date. It helps us understand how factors such as patients’ understanding and building strong relationships with healthcare professionals may help alleviate anxiety…”

Early Detection through Medical Compassion

Any person that has the fortunate experience of having their disease detected early will tell you how essential it is. In the case of macular degeneration, early detection means more years of being able to see.

Dr. Carl D. Regillo, director of the Retina Service of Wills Eye Hospital and professor of ophthalmology at Thomas Jefferson University comments on a National Eye Institute HOME study regarding early detection,

“This study, which was designed to look specifically at early detection and good vision, demonstrates just how effective our therapies can be when we detect and treat wet AMD while vision is still good,…If we initiate treatment when visual acuity is 20/40 or better, the probability that we can maintain that vision through 2 years or more is over 75%.”

As more physicians become attune to their patient’s psychological needs, the more patients will feel comfortable and safe to be able to recall macular degeneration symptoms, essential to early detection.

Some of these beginning signs include:

• Unexplained shadows
• Fuzziness
• Distortions
• Blurriness
• Central vision haziness
• Experiencing symptoms with or without glasses
• Need for extra light
• Less vibrant colors
• Challenge of face recognition
• Images have less definition than you remember
• Seeing things that are not there

Add Talk Therapy

There is no reason to suffer alone, especially if your support system is minimal or non-existent. Seeking out a professional therapist that you can work with to tackle anxiety, depression or anything else related to your macular degeneration can be highly beneficial. A therapist can help you recognize symptoms as well as verse you on how to communicate with your physician.

If talk therapy is not possible then approaching your doctor with these concerns may be all you need to get support.

Australian researchers combined their work in a review of doctor-patient communication which is published in the Ochsner Journal (Spring 2010), concluding that,

“Doctors with better communication and interpersonal skills are able to detect problems earlier, can prevent medical crises and expensive intervention, and provide better support to their patients. This may lead to higher-quality outcomes and better satisfaction, lower costs of care, greater patient understanding of health issues, and better adherence to the treatment process.”

Don’t Give Up

When it comes to macular degeneration or any disease for that matter, additional assurances can go a long way. In a society that seems to be flying by at such a rapid pace it is easy to feel lost, like another number and uncared for. When this occurs the brain can go into flight mode, running from anything that may help. Eventually you may delve into a deep, almost anti-social mode which could be more difficult to pull yourself out of the longer it continues.

Take advantage of the many support systems around you including family, friends, and professionals. You may feel no one is there but if you speak from the heart, sometimes swallow your pride and genuinely communicate what you are going through it could make all the difference in the world.

“Medicine is an art whose magic and creative ability have long been recognized as residing in the interpersonal aspects of patient-physician relationship.” – Dr. Judith A. Hall, Psychology Department, Northeastern University

Macular degeneration no longer has to be dealt with in the dark. As millions suffer there are  people out there just like you. This includes online and in-person support groups that you can easily utilize so you attain the quality of life you deserve.