Riding the Emotional Roller Coaster
When you were first diagnosed, were you in shock? Did it throw you into anxiety and depression? Of course, it did! That’s a normal reaction when we get news of any life-changing illness. You may still be feeling this way.
An emotional roller coaster
I can tell you from talking with hundreds and hundreds of people over these last three years that it may take some time, but it is possible to take control of those emotions through education and support. I can also tell you that many people say they experience these emotions again every time there is a change in their vision. It’s like riding a roller coaster!
You’ll find articles that refer to the grief cycle which traditionally include the stages of denial, anger, bargaining, depression, and acceptance. This model came from pioneering work by Elizabeth Kübler-Ross related to the stages someone goes through with a terminal illness and then later applied to the grief when a loved one dies.1 Since then, there have been studies that showed that not everyone goes through all of those stages or in that order. No matter the emotions, there are ways to stay on this roller coaster!
Click here to see the image I think best describes the stages of grief and how we realistically ride this emotional roller coaster.
You are not alone
You’ve come to the right place! You may feel that your family and friends don’t understand what you’re going through, but we will. Here are some things that have helped members in my group:
- Try to put your feelings into words. Try starting a sentence with, “When I think about losing my vision, I feel…”
- Ask others if they feel that same way. “Anyone else having anxiety attacks?”
Separate the facts from the fiction
“Will I go blind?” is a big question. With AMD, you will not lose all of your vision if any. It’s at the advanced/late stages where there can be central vision loss. With earlier stages, there may be blurriness & distortions that create visual impairment.
Who develops advanced macular degeneration?
The NIH NEI (National Institute of Health National Eye Institute) article ‘Facts About Age-Related Macular Degeneration’ says, “Not everyone with early AMD will develop late AMD. For people who have early AMD in one eye and no signs of AMD in the other eye, about five percent will develop advanced AMD after 10 years. For people who have early AMD in both eyes, about 14 percent will develop late AMD in at least one eye after 10 years.”
How many people have wet and dry macular degeneration?
90% of people with AMD have the dry type, 10% have advanced dry AMD/geographic atrophy or wet AMD.2 You may hear more about wet AMD because the treatment is injections into the eye which sound awful and upsetting.
Are you thinking, “So I’m supposed to get past the denial, anger, depression and then get to acceptance? How can anyone accept this disease!?”
What is acceptance?
Most people think of acceptance as a condition where you sit back and say, “I’m OK with this,” and that’s the end of that! Acceptance is a process, not a destination. Michael J. Fox, an actor who developed Parkinson’s at an early age, said: “Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.”
Strap yourself in!
I regularly observe people going through this process. If you strap yourself in and look around to see all the seats on this roller coaster filled with people just like you, you may not enjoy the ride but you’ll survive it!
Do you still drive?