Being told MGD 'is not serious' when first diagnosed

[khmedia]

Being completely oblivious to the impact of dry eye having had normal eyes all my life (I'm 34 now), I find it remarkable that when I was diagnosed with MGD, the specialist started by saying "well good news, its not serious". She then proceeded to tell me I have a chronic condition called MGD. It was my first time hearing the word 'MGD'.

Needlesstosay, given she said the words 'its not serious' before announcing that I had MGD (a chronic condition) I felt great about things.

So many months on having experienced what MGD can do to your life (and from reading the stories of other users) I believe that there was something seriously wrong with that statement 'its not serious'.

Given the whole cocktail of issues which can arise as a result of having MGD. The lifestyle changes, the change to how we may socialize, the daily routine, how it affects working with computers, driving, not to mention the mental challenges (and this is putting it mildly) - its seems that the health service is completely uneducated about this.

I truly felt that 'not serious' refers to 'you won't go blind'. I feel that whilst blindness is obviously a serious new challenge to anyone, that MGD in its own way is also a 'serious' illness.

I felt disappointed that she created a false impression of the disease in saying it is not 'serious'. Then again, unless you experience this condition for yourself at first hand you may never know how serious it can be.

Kevin

[Katewest]

Wow that is so lame! Your MD obviously has never had an issue with her eyes. I find myself constantly being frustrated by docs. Some mean well and others are just clueless. "Have you tried non-preserve eye drops"? Or "Just try blinking more" I laugh so I don't kill them!

[rm14dp]

I had much the same experience. Having had normal eyes until having cataract surgery then being in pain every day since with dry eye and MGD, I was first told " its only a bit of dry eye" then " I can see a bit of Bleph but its nothing to worry about" then I asked for a second opinion and was given a letter from him to give to the first Doctor which opened with " I have told Mrs ****** that there is no danger to her sight". I went to the eye unit at another hospital and found a wonderful consultant who is now doing what she can to help me. If only they had " a bit of dry eye" or a "bit of Bleph" I think they would be far more understanding of how we feel and perhaps treatments would be forthcoming faster.

[Faith1989]

I had this experience with the first eye doc I seen. I paid to get lipiflow which helped for two weeks. Now that I see an ocular surface specialist, I feel so much better. They know it's painful and can cause a serious dip in quality of life. People without it just don't understand how painful and angering it can be. I read an article about how little research is done on blepharitis as it doesn't affect vision. The guy who wrote it was mad that pharmaceutical companies can come out with cosmetic fixes for the eyes (latisse) but not for chronic, painful conditions. I agree. It's disheartening.

[lizlou29]

I saw an ophthalmologist about a year ago who said he had posterior bleph and so did his girlfriend, it was really nothing to worry about. This was after I told him is been off work and couldn't read for long, had no social life etc. I was in tears and he kept saying it was nothing to get worked up about just do warm compresses and don't think about it. There must be varying degrees of severity. My current ophth doesn't have dry eyes but says he has learnt through me and another woman of a similar age to me how devastating it can be.

[DryLondoner]

I saw an ophthalmologists who refused to believe admit there was anything wrong with my eyes, even when one eye consistently produced a schirmer score or around 2mm.

These things don't have simple cures, I reckon it's easier to say "it's in your head - deal with it", than to say, "I am not experience/knowledgeable/patient enough to deal with your problem, but here is the phone number of someone who is".

My GP sat across from me, and said, "your eyes look fine, I've had LASIK and I just pop a drop in every now and again".

[Rebecca Petris]

Classic sign vs symptom disconnect problems... sigh. Dry eye is, by and large, a SYMPTOM DISEASE. Doctors don't think in the language of symptoms - they think in the language of clinical signs. The real life impact of the symptoms is so often quite disproportionate to the apparent medical seriousness/severity.

The poor stupid doctors (forgive me doctors, it's just an expression) really do think they're delivering us good news. They just don't get it, that the only good news they could possibly bring us is that they have something that really will actually make us feel better in a safe and sustainable way so we can manage our lives a little more easily.

I imagine people disabled by elusive chronic pain syndromes get much the same response: "Good news, it's not life threatening!" ("Strange, why isn't my patient overjoyed? Maybe I'd better recommend an antidepressant.")

[justbob]

I got same "not serious" line, and it could've been avoided if doctors had a tiny bit of respect for patient quality of life. I also had ECLO's dismiss it ("doctors are busy working on serious conditions"), my family think it's a joke ("you just want something to complain about", "lots of people get health conditions are they get older", etc etc). Not only is it a condition that can destroy your life, cost you a fortune (what happens when you run out of money for stuff like supplements?), but completely isolates you as well since nobody understands it, and most of the support for normal depression is useless and leads to more belittling comments. And if you already have mental health issues they will be used as an excuse and good luck getting anyone to ever take you seriously. I think it all shows how limited human empathy really is, if they can't visualize a body part hanging off or blood spurting out it's doesn't compute.

[khmedia]

Hi justbob,

I can be frustrating can't it! The lack of empathy out there is definitely startling. The specialist who told me 'I've good news its not serious' (the reason I posted this thread), when I revisited her several months later she looked at my eyes and said 'they don't look that dry'. The exact same quote as the NHS Doctor I saw in the UK "they don't look that dry to me'. As we all know on this thread dry eye is the overall phrase used as an umbrella phrase for all conditions of 'dry eye'. I think when these people see any bit of moisture on the eye they think 'it looks moist to me, therefore it is not 'dry'. I think they believe the only time you would qualify for complete empathy would be if there was no moisture what so ever on your eye. The don't realize that the any moisture on the eye is extremely limited and in some cases contributed to by serious warm compresses or eye drops prior to a visit.

And I under what you mean with regard to family thinking it was a joke. I've got that too with some saying 'but isn't he always prone to slight exaggeration'. A confusion of my personality where I can be a bit eccentric at times! I suppose this is like the boy who cried wolf!

I don't like who doctors/specialists use the comparison with other patients i.e. 'I've seen much worse than this' but rather deal with a patient in isolation. An example could be - having a car accident victim in with broken legs and arms and then dealing with someone with mental health issues, you can't turn around and say 'look you think you have issues you should have seen what I had to deal with earlier'! I suppose it is the same with dry eyes. Too often doctors think they we like to complain. It's not fair.

I empathize with you!

I got same "not serious" line, and it could've been avoided if doctors had a tiny bit of respect for patient quality of life. I also had ECLO's dismiss it ("doctors are busy working on serious conditions"), my family think it's a joke ("you just want something to complain about", "lots of people get health conditions are they get older", etc etc). Not only is it a condition that can destroy your life, cost you a fortune (what happens when you run out of money for stuff like supplements?), but completely isolates you as well since nobody understands it, and most of the support for normal depression is useless and leads to more belittling comments. And if you already have mental health issues they will be used as an excuse and good luck getting anyone to ever take you seriously. I think it all shows how limited human empathy really is, if they can't visualize a body part hanging off or blood spurting out it's doesn't compute.

[justbob]

I can be frustrating can't it!

Extremely.

The lack of empathy out there is definitely startling.

I almost wonder if it's an evolutionary thing, "eye problems, well useless to our tribe now, so where shall we bury him?". That's exactly how I feel people have responded to me.

The specialist who told me 'I've good news its not serious' (the reason I posted this thread),

"good news it's dry eye, you'll end rest if your life miserable!", "bad news you're going to lose your little finger!".

I think when these people see any bit of moisture on the eye they think 'it looks moist to me, therefore it is not 'dry'. I think they believe the only time you would qualify for complete empathy would be if there was no moisture what so ever on your eye.

Probably just find another reason to dismiss it.

The don't realize that the any moisture on the eye is extremely limited and in some cases contributed to by serious warm compresses or eye drops prior to a visit.

Yes I got that too, "tear film stable", with a ton of effort.

And I under what you mean with regard to family thinking it was a joke. I've got that too with some saying 'but isn't he always prone to slight exaggeration'. A confusion of my personality where I can be a bit eccentric at times! I suppose this is like the boy who cried wolf!

Mental health is just as real even if unseen by others .

I don't like who doctors/specialists use the comparison with other patients i.e. 'I've seen much worse than this' but rather deal with a patient in isolation. An example could be - having a car accident victim in with broken legs and arms and then dealing with someone with mental health issues, you can't turn around and say 'look you think you have issues you should have seen what I had to deal with earlier'! I suppose it is the same with dry eyes. Too often doctors think they we like to complain. It's not fair.

It's different mindset when it's chronic (and MH problems are often chronic), if someone told me I'd be cured and out of my "casts" in 3 months it would be different. Yes it's completely unfair.

I empathize with you!

Thanks, I know people here do, just our little island in an ocean of sharks.