I think it’s important not to drive yourself too crazy

Photo of a woman talking with the doctor (PantherMedia / forestpath)

Hannah, 54 years old

“The diagnosis came as a huge shock to me: I thought I might be blind within a year.”

About ten years ago I went to see an eye doctor for the first time in a long while because of a stye. At the time I also had stinging pain in my eyes whenever I looked at flashing lights, for instance on cars. I had treatment for the stye and only went back to the doctor for a check-up one year later. For various reasons, I hadn’t managed to go in any earlier. When I finally went, they realized that I had glaucoma. The doctor said that my optic nerve was affected. We then did a test to measure my field of vision and found out that about half of the photoreceptor cells in my right eye were already damaged, which was limiting my field of vision.

My eyes hurt whenever I saw flashes of light

I was totally taken by surprise. I knew that my eyes hurt or sometimes watered when I saw things like flashing lights on ambulances, lightning or other flashes of light. But I never for one moment thought that I might have a problem with my eyes – I had just put it down to stress. I had no idea what glaucoma even was.

The doctor didn’t have any time to talk to me about the diagnosis at the time. That was a real problem for me. When I got home I started panicking so much that I went to the emergency department of a hospital.

The people in the outpatient department were really shocked by what my field of vision was. The upper half was partly black and my glaucoma was quite advanced. I must’ve already had glaucoma for years by that point.

In the outpatient department they measured the pressure in my eye over a period of 24 hours. And various other tests were done, too, in order to find out what type of glaucoma I have and how severe it is. I have open-angle glaucoma, and they prescribed eye drops for that.

The diagnosis came as a huge shock to me: I thought I might be blind within a year. Nobody could tell me how long it might take before I went blind. That meant a lot of uncertainty.

It’s now been ten years since my glaucoma was diagnosed

I didn’t realize that I had such poor eyesight before. The problem is that you yourself don’t check how well you can see with each eye separately. You always use both eyes. If I had tried looking with only one eye and covered the other, I would have noticed a lot sooner.

It’s now been ten years since my glaucoma was diagnosed and I’ve learned a lot since then. I’ve become more familiar with my body and know how to interpret certain sensations. I can feel when the pressure in my eye is probably high, and when it’s probably low. At first I was really anxious and used to go to the hospital all the time because I was scared.

For a long time I used eye drops that I tolerated really well. Unfortunately they stopped making them at some point, and I had to start using other eye drops instead. I didn’t tolerate them as well as the old ones. Although they have the same drug in them, my eyes always hurt since I started using the new ones. Another drug I tried out made me feel exhausted and out of breath when I climbed stairs. I spoke to the doctor about these side effects and then we tried out another drug. I think it’s really important to discuss these things with your doctor. If you don’t feel happy with your doctor, then you should switch to a different doctor. You have to be able to work as a team.

It’s not that easy to use the eye drops correctly. Many people don’t get the drops into their eye in the first place, or don’t put them in properly. That’s something you have to practice at first. A lot of older people get their partners to put their eye drops in for them. But then they become dependent, which is a problem if their partner passes away or isn’t at home. I find it important to learn how to put your eye drops in yourself. I practiced using artificial tears (ed. note: tear substitutes for dry eyes). I also read about how to do it in information leaflets.

I had surgery on both eyes, too. Unfortunately things didn’t improve. But I’ve met other people who benefitted from surgery. Deciding whether or not to have surgery is a very personal choice that should only be made after weighing the pros and cons.

The pressure in my eye has stabilized

I now go to the doctor for a check-up about four times a year, and get by just fine. My vision may get worse over time, but the pressure in my eye has stabilized. My eyes sometimes hurt, burn, itch or sting, and they sometimes get dry from all the eye drops I use. Blinking a lot and yawning helps to keep my eyes moist.

I always make sure I get a copy of any doctor’s reports so I have something to take home with me. I started a folder that I update regularly, so that all the important information is one place. If you’ve found good doctors and you always have check-ups at the same place, then you can compare current and past results.

Still, every time I go for a check-up I worry that my vision may have got worse. Sometimes I have a suspicion, and tell the doctor that the visual field loss in my left eye is probably greater than before. I feel especially anxious in the time leading up to the check-up. Then I worry about how much longer I’ll be able to see, drive a car, or do various other things.

I can still drive okay, but I only drive in the summer and when I’m feeling up to it. I don’t drive in the dark. I can’t do that anymore. I’ve also decided to sell my car next year. I don’t need it, and like to travel by train.

I made an active effort to relax more

I was 45 years old when I found out I have glaucoma, and I will be affected by it for the rest of my life. There are a lot of different kinds of glaucoma. I think it’s important not to drive yourself too crazy, but instead learn about the disease so that you feel more relaxed about everything. I also find it helpful to be able to monitor how my glaucoma develops by going to the regular check-ups.

I had the feeling that stress had a major impact on me and my eyes. After being diagnosed with glaucoma, I tried to change my attitude towards my work, and to lower my expectations of myself a little. I tried to be a bit calmer in my everyday working life. That was a big step in my personal development. I made an active effort to relax more. For instance, by doing reiki, jin shin jyutsu and stretching exercises. I also do things to relax at work, like breathing exercises. A lot of things have got better. For example, I now consciously take the time to have breaks every now and then. But it’s still pretty hard to make basic changes like that.

I also think it’s really important for people who have glaucoma to be able to talk about their condition. People often underestimate how difficult living with glaucoma can be, psychologically. It can help to talk to someone about it, or just to have someone who will lend you a sympathetic ear.

I also found it useful to read up a lot on the subject. There’s a lot on the internet, and there are also many organizations and self-help groups that offer support. And your doctor can’t do everything for you: you have to learn to do your part and take on responsibility for yourself.

At the beginning, when you’re first diagnosed with glaucoma, I think it’s important not to worry too much, and to try to deal with it calmly. Depending on what kind of glaucoma you have, the disease may progress slowly over many years. But if you have angle-closure glaucoma or if the pressure in your eye is high, then it has to be seen to quickly to prevent more permanent damage.

 

Acknowledgement

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.