Depression & anxiety

[Rebecca Petris]

For a little project I'm working on... Does anyone here care to share:

1) What things your doctors have done/said that unwittingly made you feel more depressed or anxious?

2) What could your doctors do/say that would help you when you're depressed or anxious about your eyes?

[Guest]

For a little project I'm working on... Does anyone here care to share:

1) What things your doctors have done/said that unwittingly made you feel more depressed or anxious?

2) What could your doctors do/say that would help you when you're depressed or anxious about your eyes?

Hi Rebecca,

One thing that stuck out in my mind was when the opth told me we needed to 'talk about this like adults' when I told him how my eyes were affecting me emotionally and it led to a few tears while I was trying to explain. It was patronising and unnecessary as I wasn't hysterical, just sad.

I asked him if there was any chance they could recover or get better from the state they were in, I didn't expect him to lie or pander to me (on reflection there wasn't much he could say) but he stared at me blankly and shrugged. That was the worse thing - no answer, just a big blank. Thinking back if he just said things could always improve, or we'll work together to get there, I'd of felt so much better. The main issue is you don't feel like the opth is really fighting your corner, if they show they care and want to help you on this difficult journey it means the world.

Claire

[bakunin]

When one said that I should look through the "good side": "you have severe symptoms, but you don't have severe clinical signs". That was depressing, because my symptoms were really killing me (til now I have terrible hormone problens due to the eyes symptoms).

[JoanneB]

When one said that I should look through the "good side": "you have severe symptoms, but you don't have severe clinical signs". That was depressing, because my symptoms were really killing me (til now I have terrible hormone problens due to the eyes symptoms).

What do you mean by hormone problems?

[dave25]

When doctors say that there is nothing they can do or that they have "exhausted" all options. On the other hand, I've had good doctors tell me that there is always something else "we" can try. Or that "we" will figure this out together. Anything that shows the doctor understands how much pain you are in and is willing to help you and not give up on you is extremely uplifting.

[Nightbird]

1) What things your doctors have done/said that unwittingly made you feel more depressed or anxious?

I could write a book, but I’m going to pick out the worst thing. It happened when my eyes were at their worst and I had started wearing moisture chambers almost all the time. After a couple of months wearing them I went for an exam and the doctor said “Your corneas look better than they have in years.” He was probably actually trying to make me feel better. However my thoughts were: I’ve been seeing this guy for years, every visit he would make light of my problem, telling me it’s just annoying (this was true up until a few months earlier), basically implying I shouldn’t worry about it. He never once mentioned the corneal damage he had obviously been seeing, which thank goodness was not permanent. I was both angry and depressed by the thought that I had trusted this doctor for so long and thought he really cared, but in reality he didn’t give a *****. That was the day I started looking for another doctor. Fortunately I found one who does really care and is helping me, a lot. And keeps stressing that I have to protect my corneas.

2) What could your doctors do/say that would help you when you're depressed or anxious about your eyes?

I would have preferred honesty even if it made me feel worse for the moment. I could have taken steps, like moisture chambers, years earlier if I had known. At least it would have meant that he actually cared.

[LaDiva]

I think starting with a bit of empathy is very important. I can remember only a handful of doctors who have ever said "I am so sorry you don't feel well". Acknowledging our feelings is so very important, even if there isn't much else that can be done to help. Conversations have gone like this: Me, crying: "I hurt. My eyes hurt so much, all of the time." Doctor: "You have dry eye. There is no cure. Do you use eye drops?" I'd like to hear the doctor say: "I can see you really don't feel well. I am so sorry. Let's look at some things we might try to help you feel better." If they can't think of anything, how about a referral? My current doctor told me there were a few things more we could try, and then when I returned to hear what they were, he said that there wasn't anything else he could do. Not sure how that works. Empathy, please, and get your hand off the door handle and quit acting like I am a bother and you are in a hurry. Another response doctors give is "I have dry eye too". The problem is that they don't have dry eye like I have dry eye, or they wouldn't be at work, or they would be wearing goggles. You don't have dry eye like mine, and it doesn't hurt, so please don't compare your situation to mine as a measure of understanding.

[runnergirl]

I am a very healthy person. Have always taken care of myself. I felt like if I ever had a problem, I could handle it. Until that dreaded day....

I knew my eyes were not right so I went to see the eye doctor.......He said, "you have severe dry eye DISEASE and there is NO CURE....it could lead to blindness, lets set up another appointment."


WHAT? It put me into immediate depression.

What would have been better is if he sat down with me and told me that I have dry eye, but we can manage it together, you will be just fine.

[DCRdryeye]

1. The following statements were made by various ophthalmologists over the years, and increased my anxiety...

‘Stop being a martyr and just get punctal plugs, restasis is too expensive’ (ophthalmologist)

‘There are more important things in life than worrying about your eyes’ (ophthalmologist)

‘You don’t need to wear moisture chamber glasses’ (opththalmologist)

‘Scleral lenses are only for severe corneal problems, you don’t need them’ (ophthalmologist)

‘Blood serum drops are reserved for the most severe cases of corneal disease’ (ophthalmologist)

‘There’s no cure, you just have to live with it now’ (oculoplastic surgeon).

‘I’ll prescribe you Polygel, they will fix your dry eyes won’t they?’ (local general practitioner).

2. Rather than be unsympathetic and marginalize the problem, they could have understood and listened to their client better. I would have preferred to hear something like, ‘In the last 10 yrs advances in dry eye care has really taken off and I’m sure in the near future new treatments will offer significant relief’.

[lizlou29]

A few things that made me worse in the earlier days (now i don't have time for the negativity):

"I have MGD as well, I don't understand why it upsets you so much. Warm compresses are all you need." He'd not noted TBUT or my severe AD.

"Goodness your eyes are so dry and you are very young for this. We'll really have to watch this as you age because it will inevitably get worse especially when you go through menopause."

"You aren't doing as i say, you need to Lacrilube at night even if you think it irritates your eyes it's not going to harm you"

"Do. You find it embarrassing wearing those goggles (moisture chamber glasses) at work"
What they could have said/have said:

"It may take some time but we'll try all we can to improve your symptoms"

"There is ongoing research for dry eye so there will always be more things we can try in the future"

"The impact this condition has on your life can make you feel very low. Do you feel you have enough support?"

Rebecca - i want to take all these answers to my eye clinic and give it to the staff incl. nurses and receptionists! Giving me ideas. Obviously wouldn't do anything without members' permission.

[Katewest]

1) What things your doctors have done/said that unwittingly made you feel more depressed or anxious? One doc asked to take a pic of my eyes with his phone to show his "class" or something like that. There was no follow up from him. He was a optomologist not even a ophthalmologist. OR Lipiflow/IPL doctors who act more like sales men. I had one doc pushing the lipiflow on me and he said all of my mibomain glands are dead but I would still be a good candidate for the 2k procedure.
I just remembered two more: I had one doc patronizingly tell me to "Stop reading the internet" hmmm, is that because I know what a mibomian gland is or that there are three layers in the tear film? Threatened probably that I would uncover is ignorance.
And the other: I finally got in to see the top optho in my area and she says she never prescribes steroids because she "saw people in Isreal that were blinded by it" and suggested non-preserviative tears. I was so upset I wanted to cry but I held it together long enough to say in my least mocking voice, " Hey, thanks doc! I hadn't thought of that!"

2) What could your doctors do/say that would help you when you're depressed or anxious about your eyes?
I can't remember her name but the main doc at Boston Foundation for Sight was amazing and far and away the best doctor I have ever been too. I ended up not being a good candidate for the scleral lens but she she followed up with me for a while and always answered my questions when I called. She seems passionate about helping me and other like me that had dry eyes and no real diagnosis.

PS I am doing SO MUCH BETTER. I'm in no way cured of dry eyes but I am managing it and able to live relatively pain free these days. I will post soon about it. I don't want to do it in the "successes" yet because I feel I still have a little ways to go still but I am a lot better

[Katewest]

Also I'd like to second what Lizlou29 said. Anytime a doctor says something like "Oh and what a tragedy because you are so young!" Yeah, that bothers me. If its not productive then thanks but I'd don't need your pity.

[DryInDenver]

Days with doctor appointments are often some of my worst days for anxiety and depression. This is mainly because of what I say more than what the doctor says. Most of this applies to the 9 months after LASIK before I got sclerals when every single day was a grind to get through. On my best days I wasn't focused on the disease. Sure I went through my routines such as timers to put drops in every 5 minutes when on the computer, wore my goggles in public and at work, warm & cold compresses yada, yada, yada, but I wouldn't focus on them. Instead I'd focus on work, my family, and things that made me happy. I vowed to my family that "I'm not going to let this F up my life" and did my best to heed to that. However on doctor appointment days, I had to focus on every detail of pain and agony so that I could do my best to give the doctors the best information to help with diagnosis and treatment. In doing this, I couldn't help but feel like a victim and wallow in the despair of the situation I was in. So sometimes it didn't matter what the doctor said to me, I was in the dumps no matter what. In fact when I got sympathy from a doctor that validated my anguish. After going through my routine and all the different things I'd tired I remember one doctor's assistant saying to me, "Your poor eyes. We've thrown everything at them haven't we?" It was caring and compassionate but it actually made me feel sorry for my self. I wouldn't have her act any other way though as I get my best care from that office because when it comes to dry eye they do "get it" and they really want to help.

The behavior that I despise from doctors is dismissal and conduct that reveals they could care less whether or not I get better. For instance, I remember at one of my LASIK follow ups I started asking questions about serum drops after reading about them on this site. The doctor, starting to walk towards the door, said "oh, yeah well we could dry those, but not now they are really expensive." Since I was in agony I was willing to commit significant financial resources to finding any relief and said "How much?" He responded "Oh..... hundreds of dollars," and then walked out of the room. Never mind that they were cheaper than the Restasis that he prescribed me, that was inexcusable. Clearly he didn't know the answer, didn't care to know the answer, and wouldn't be effected either way whether or not I got better - or worse. Another example of this behavior is when a doctor tries to relate to my problems by comparing it to his/her own MILD dry eye symptoms. "You know, I have dry eye too, these are the drops I uses." In effect, this just belittles the problem, discredits claims of constant pain, and displays a complete lack of understanding by the doctor.


A big part of the problem is that when doctors have trouble identifying clinical signs of dry eye they are often tempted to dismiss the problem or conclude that the patient is over reacting. I think a lack of understanding by many doctors of dry eye is the culprit and that a little bit of education on the subject could go a long way.

[Ericska]

When I went to Emerge during the summer, the first thing the resident said was you have SEVERE, SEVERE, dry eyes and yes it does lead to blindness! I went home and cried for days and days and days. I even contemplated the horrific because I just can't live like that. After that I went to one optometrist after another and even my family doctor (who is no longer my family doctor) said yes "but don't worry, it's a SLOW process"! Do these doctors not realize what they are saying about a topic they obviously are not well educated about? That GP even admitted he's never heard of my type of dry eye disease and then went on to compare me to his DOGS who apparently have dry eyes. I couldn't believe it. I finally found a dry eye optometrist in town and he was the first to say that he has never known dry eyes to cause blindness. I have never had eye surgery, I don't have any of the diseases known to dry eyes and it is not from any medication side effects because I'm not on any meds.

It is completely devastating to be told that your eye disease is not curable but why not offer some help - look in to options - not just jump to blindness! I have been suffering for over 15 years but this past summer, something has happened and my dry eyes became so severe that I need drops every 30 minutes. Doctors who don't understand claim we are over-reacting. I had one doctor actually laugh at me! If it is such a problem, why is it so misunderstood!?

[alb1967]

Oh I had one Dr tell me "oh you just have so many things going against you, you had lasik, you have dry eye disease and you have cataracts. And things will only get worse because of your age" At this point I started to cry and he said I am sorry but I have other patients. I was in shock and I NEVER went back to him again. I now have a caring Dr who fitted me for sclera lenses. Even though my eyes have gotten worse in the last few months he has tried everything. (He thinks I may have Sjogren's so I am getting tested this weekend for that). But does understand because he wife has dry eyes. Not as dry as mine of course. But he does understand. Also I can email him at anytime and he always gets back to me.