Comments about quality of life

Survey Results > Quality of Life > Comments about quality of life

  • I feel extremely angry at the medical industry because of how expensive many MGD treatments are, especially given that they aren't covered by insurance. This anger has led me to delay treatment because I believe some of these companies have unethical business practices which I don't want to support with my money. I have always tried very hard to live a healthy lifestyle. I've never smoked anything, always drank only in moderation, got plenty of sleep. And I avoided going to the doctor because of the cost and lack of price transparency. I think if insurance worked better in the USA it's possible my severe MGD could have been caught earlier.

  • Dry eye disease controls my life. I am doing fairly well most of the time but that is because I have had to change so much. I had to leave my job because the air quality and lack of control over temperature made the environment toxic to my eyes. I also couldn’t deal with looking at the computer screen 8 hours a day. I wear goggles which help more than anything but I’m self conscious about them. I avoid certain places like malls. I can’t tolerate fragrances or being near people wearing perfume or scented lotions. I have changed my diet completely. I follow the autoimmune protocol. I spend a fortune seeing specialists and on supplements and serum tears. I feel like I’m always at the doctors office. The eye pain can be unpredictable and can ruin plans I make.

  • My eye doctor does not understand the severity of my dry eye. Little concern for me and no recommendation for treatment. It is just "on with the next surgery!" My family does not understand the severity either

  • Total downer in beginning since it was associated with corneal pain which my past dr did not acknowledge. Since pain was treated symptoms MUCH better though it still gets me down. Learning to live a new life and accepting the new me.

  • I have ill health and have struggled with the activities of daily living for many years. The added burden of constantly caring for my eyes is overwhelming. Putting in drops when your hands barely work is daunting and having to do it so often is awful. I need my carer to look after my goggles, keep track of my medication and supplies and so on but if he is unwell it is devastating.

  • My self-confidence is lowered because I do not feel as competent to do things independently. Driving was an issue for awhile but is better now. I am seeing a counselor for anxiety. Half of each hour session is spent talking about my eye problems.

  • My multiple eye diseases, including dry eye consume so much of my time. It is impossible for me to separate them out and I have been in vicious cycles because of how one disease negatively impacts upon the other. Not only do I have to do daily eye care but I see two different ophthalmology specialties several times a year (sometimes each month) in addition to an optometrist. I can't even begin to track the amount of money I have spent over the decades but it is significant. Needless to say, eye diseases have impacted my relationships over the years. I have missed out on on social events; I could not attend my best friend's funeral 3 years ago due to a very bad corneal ulcer and I remained under close watch by my corneal ophthalmologist; I was not able to visit my mother more than once during the final year of her declining health because I had so many active problems with my eyes and ophthalmologist did not want me traveling (fortunately, I was able to attend her funeral). I used to have big beautiful brown eyes that everyone complimented me on when I was younger. Now my eyes just look weird to me due to the effects of all the diseases and surgeries. I managed to keep working through the years but I held back because I did not want to be front-and-center anymore due to declining confidence.

  • The thing I haven't mentioned is that as there is no cure, I worry so much about my 29 year old daughter....the growing affect it will have on her work prospects, her relationship prospects and ultimately her state of mind. "Dry eyes" sit between you and life, between you and hope....and no one but those with severe dry eye can understand this.

  • The skin directly under my eyes is very tender and often "stings" due to wiping or dabbing my eyes with a tissue frequently. Additionally, while I haven't stopped wearing makeup, I often have to touch up my eye makeup for a couple of reasons. The tears often "wash away" any mascara - particularly on the bottom. This is even when wearing waterproof mascara. The eye shadow will often looked messy because the tears will either wash away some of the eyeshadow, or cause it to looked "clumped" in spots.

  • I am physically and mentally healthy for my age, but after a very slow and painful recovery from PRK ten years ago, and now recovering from cornea transplant nine months ago, my life has become one of avoidance and merely existence. I am physically active, have nice family interactions, but avoid most friends and social events. I anticipate wearing a special contact lens soon, but dread the adaptation I will have to endure. I’m hoping it will be more comfortable than I anticipate so I can finally drive and resume my life.

  • Min8mal impact. Not good at putting drops in while I am out of my home.

  • I feel like a burden in my relationships because sometimes I have to have accomodations or change my lifestyle. It ruined my military career.

  • I have to force myself to not think about having to live the rest of my life with dry eye. The pain is always with me and I have to carry all my dry eye accessories with me all of the time. I hate what my life has become. The daily struggle is so tiring. When I try to explain DED to others, I know they can't understand how bad it is. I get angry when they tell me their eyes were dry last week. My sister thinks I am making a big deal about nothing.

  • Spent tens of thousands of dollars of my own money on procedures, drops, co-payments, scleral lenses and other treatments that haven’t always worked. Made desperate trips to Florida for treatments that were essentially futile.

  • Having dry eye symptoms has ruin my life, my career, my social life. I am now at risk of losing everything trying to get better so I can go back to work. It is so debilitating not to mention how exhausting it is to keep going to doctor after doctor hoping someone will be able to help. Hoping that the upcoming surgery to clear the blocked tear duct in my left eye will be successful and I will be able to return to work.

  • I feel that I am not living up to my potential in my career. I feel that I can't learn as much as I like because I limit my reading and it is not realistic to use audio when other people are around, or some things I want to learn about aren't available in audio. I also feel I am not as "fun" as I used to be or as social as I used to be because I am so emotionally taxed from just trying to get through a normal day with such a chronic condition.

  • For me there are 2 sides to my dry eye. 1) How my eyes physically feel- burning, itching, painful at times, foreign body sensation, etc and that affects my mood. 2) How my eyes look to others and how they react. People either think I'm wasted or just don't know how to take care of my own eyes. Even family and close friends do not understand dry eye disease. Perhaps I don't put enough effort into trying to explain it, but I don't want to come off as a complainer. Result is that I sometimes resort to something like Lumify that for a short time makes me look just like everyone else who does not suffer from dry eye. The worst part of this is that I KNOW drops with preservatives are harmful and I do it anyway. Then guilt sets in.. It's a cycle I have not been able to break

  • The countless occasions on which I have been seen by physicians who dismissed or trivialized my symptoms, laughed out loud at my assertion of being disabled by symptoms, and failed to explore and document the basic parameters/markers of dry eye disease in my case ultimately changed my perspective regarding medicine and health care in the U.S. irretrievably. I learned gradually that I could not depend on the medical establishment to lead me to solutions, no matter how advanced the science in the field of dry eye disease would become. Most doctors I encountered were unmotivated to diagnose properly and thoroughly. Most lost interest either during the first or second office visit. None would even accept copies of important research articles that I would offer for their consideration. So I became an intensely studious citizen scientist, in the end, and this has put me in good stead in relation to dry eye and any other health issue I confront in myself or in a family member. In fact, my entire identity has changed to the extent that before anything else, I AM a citizen scientist.

  • Scleral lenses are saving my quality of life; without them in my dry eye is so annoying and no drops help the dry feeling at all.

  • Dry eye impacts every aspect of my life. I have great coping skills, but dry eye uses up much of my emotional energy--there isn't room for other health concerns or major stressors. Last year I had rotator cuff surgery, and I was terrified that I wouldn't be able to cope with both issues at once. I was so prepared and went through the surgery and recovery with strength and positivity. But sometimes dry eye impacts day to day functioning in a way that it is hard to anticipate in advance. Today, I went into church and there were six fans going. I wanted to walk out because I knew in an hour my eyes would be so dry. I just shut my eyes in church and listened. I don't like wearing moisture chamber glasses in public because I get a lot of comments; I don't mind wearing them at home. I wish there were more stylish glasses, or just glasses that fit my small face. I have four pair, and none of them fit. Socially, dry eye can be hard. I eat a special diet--dairy free, nut free, gluten free, preservative free, and low nickel. It takes some planning to make my meals. Restaurants are fine if the air is not blowing, but I am limited on food choices. When I am invited to eat at someone's house, it is hard to explain my food allergies--it feels like it is inconveniencing people. I could write a book on the trauma that I have faced with seeing eye doctors. One doctor charged me 11,000 dollars for probing. Another doctor charged me 1,200 for a ten minute appointment, and my husband saw the doctor tell his secretary to interrupt the appointment to call him away in ten minutes. I traveled 5 hours to see him and he spent ten minutes with me. I have had doctors belittle me and minimize my eye pain, saying there is no reason for me to feel as I do. I was put on chemotherapy for two years for a questionable diagnosis that other doctors see no evidence to indicate I had that eye disease. I had two horrible eye surgeons who damaged my eyes rather than helping. Until I found the right doctors, I felt hopeless. Now my doctors are angels and I am so grateful. I have thyroid disease and several other autoimmune issues that surfaced when I started struggling with dry eye. I am always thinking that if I address these diseases, my dry eye will improve, but that hasn't happened. I am so strict with trying to be healthy, but dry eye persists. I have tried lipiflow, probing, expressions, compresses, TruTear, NuLids, IPL, moisture chamber glasses, ointment, night goggles, fish oil, doxycycline, steroids, dietary changes, meditation, yoga, exercise, serum tears, chemotherapy, contact lenses, sclera lenses, amniotic tissue, limiting screen time, and Avenova to fight this disease. The expense is a huge issue. Insurance that has impacted the quality of my life. Dry eye has taught me to be grateful for every day. I realize how blessed I was before all this happened to me. I wish more effort was put into research. I know that it would just take a small miracle for me to have a higher quality of life. I am waiting for that miracle. In the meantime, I try to help others who suffer with dry eye as I have compassion for those suffering with this disease.

  • I feel like I squint a lot because I'm uncomfortable keeping my eyes open.

Dry eye survey results > Quality of Life > Comments about quality of life