Unsupportive people/ Giving up

[DMGD]

Hey. I posted earlier but everything just got worse. I'm 17 years old and I have mgd and severe dry eyes. I'm in pain 24/7 with no relief. I also have visual disturbances such as constant ghosting, halos, floaters, etc. But what also hurts me is my family.

I don't have support from them at all. They don't understand and don't even try to. My parents said I'm stressing all of them out like its my fault I feel like this. All I do is just get screamed at. You guys know how you have to go from doctor to doctor and go treatment to treatment until you find something that relieves you? I tried explaining this and I got yelled at again. They think going to an optometrist and them saying just do warm compresses and lid scrubs is a cure all and I shouldnt have any other problems after that.

I tried telling them we should go to someone who SPECIALIZES in dry eye but they said optometrist does ( which they don't) and I just need to get over it. So I don't even have the opportunity to see if anything relieves me as they refuse to take me to any more doctors.

So not only do I have to deal with this pain and vision problems 24/7 I also have to deal with it alone. I honestly never felt suicidal before this but I'm definitely feeling it now. Sorry to rant.

[Faith1989]

Hey there

I know how you feel. I'm a 27 year old female, but this started when I was 22 so it's been five years. You need to talk to your parents calmly about how you feel. An optometrist is not the person to see. You NEED an opthomologist. There are many treatments to try. Yes it will take some time to find the right one but you will.

Please do not give up. For now do the warm compresses, lid scrubs, and omega 3 fish oil. Eat an anti inflammatory diet. This will help until you are prescribed something. Also use artificial tears.

[DMGD]

Thank you so much for your advice. Warms my heart to see people in this forum helping other people. Wish my family was like y'all lol

But yeah, sometimes it just feel like it won't get any better, especially with all the stories of people suffering for years with little to no improvement. Really scary as this is supposed to be the prime of my life but it really is the lowest point. But anyway, I hope you are doing good ( or better) with your eyes! I wish you improvement if you haven't got any yet!

[Faith1989]

There are prescription treatments that will provide you with relief. I hope your parents bring you to see an actual eye doctor not an optomitrist. This will be your first step. Make sure your eyes are clean. Do you have acne or rosacea on the skin?

[DMGD]

Yes, I have pretty bad acne on my forehead in between my eyebrows that's been there for like 2 years. That's my only spot. But I'm African american and I don't think I can get rosacea unless I'm wrong... Rosacea makes skin turn pink like how fair-skinned people blush I think

[Ctrain]

DMGD, Hang in there... Don't be so gloomy, You communicate as being very intelligent (especially for being only 17)...You seem to have 2 problems... Problem #1 is the same problem the vast majority of the users of this site have, Problem #2 is a lack of communication and support from the parental units. Your condition will get better... Sure you need to slowly start to figure out and try various solutions for alleviatiing your symptoms. I'd start with buying oil based Artifical Tears "Refresh Optive Advanced" works best for me as needed in the days. At nights I go on Amazon and buy Vita-Pos Eye Ointment (ships from London). No pain at night since I started using that. Also force yourself to buy a portable small hand held humidifier--very cool and I hold mine close to my eyes when needed when on computer, watching TV, or driving my car. OK, with the folks, you need to start very slowly educating them but only alittle at a time...Since you have a computer just make a simple hard copy of visual info as to what oil glands in your eye lids actually do...Keep it calm and not emotionial...pretty obvious they don't want drama even though you may feel you need to use it to get your point accross. Thing is, whether its your parents or your boss in a few years, you have to go slowly and educate them calmly over a month or more...They'll finally get it...Then , at that point, you can proceed to slowly introduce the idea of another doctor, etc. But NOT until you've laid out the education and groundworks for them so they have a basis to start to relate to you. Try not to lecture them, don't get emotionial...Just calmly explain a few facts then more next time. Good luck...And keep your chin up champ!

[khmedia]

Hi DMGD

I totally understand. You are young so you are of the age where your family is highly involved with you and your condition. I recall something similar at your age only it was my acne and me wanting to find a solution. I recall how all the decisions to meet with people aren't just a conversation you have with yourself but rather with your family. Different people have different opinions. Some get emotional. You want to go this route and they want to go that route. Conflict arises. However it doesn't always need to be this way. As time goes on you will find that you are the controller of your own destiny with regard to your condition. You are best educated about it and therefore you ultimately will be the one who steers yourself in the right direction. People who don't have the condition (family, doctors who read about it in a text book) simple don't - and never will - understand. As time goes on and you get older you will evolve into that independent decision making person. Of course you will still get opinions from your family. They will always be able to answer your questions but ultimately you will feel confident in yourself. In the early days of my condition (I am aged 36 and have had MGD / dry eyes for about 3 years) I did a lot of consultation with my mother and wife. Now 3 years on I rarely talk to them about it as they can't offer me anything. I usually just say I'm going to see x specialist on x date. To be honest I no longer see specialists as I found them incompetent regarding my condition. So I am not only alone medically (as a lot of people may feel on this site) but also in terms of support (as also a lot of people may also feel). I just keep getting my eye drops to help lubricate my eyes in the night/morning time. I wear glasses with padding during the daytime at my work. I do feel alone with my condition. I also understand your suicidal thoughts. You can feel like a prisoner with this condition sometimes. I did 2 days ago but today I feel better. Ultimately I have grown to accept my condition. It seems the only way for me to cope. The main thing is to get to a point where your routine allows you to continue doing day-to-day things in life.

Sometimes I can even forget I have this condition and it is fantastic. Sure a lot of the time that seems impossible and it is all I think about! Ups and downs all the time.

I feel your mental pain and I know that you will look back on this post further down the line and think that was then this is now. Look at me now!

Keep strong!!

[littlemermaid]

'make a simple hard copy of visual info as to what oil glands in your eye lids actually do...Keep it calm and not emotionial' - brilliant advice, make a concise file of diagnosis + medical record. It depersonalises the problem, and for some bizarre reason, docs and family see it as more authoritative.

Use PubMed http://www.ncbi.nlm.nih.gov/pubmed/25526008 (Dermatol Online J. 2014 Oct 15;20(10). pii: 13030/qt1mv9r0ss. Rosacea in skin of color: not a rare diagnosis.Al-Dabagh A, Davis SA1, McMichael AJ, Feldman SR.) and American Academy of Dermatology website. Basically everyone can have it. Rosacea is an immune inflammation response, and can even have no skin signs.

What diagnosis/observations do you have so far?

[DMGD]

Hello CTrain, I'm slowly working up the courage to talk to them without letting my emotions get out of control. It's just very hard to explain things to people when they don't understand and I'll admit that I get frustrated very quickly. So I'm in the wrong about that and I will work on it lol. I just want them to TRY to understand without brushing me off as it doesn't seem to be a big deal to them. I follow your advice about educating them little by little and I'll look into buying a humidifier also. Thank you and I hope your well


Hi khmedia, I guess we had/have similar situations. And you're right. My parents and I don't exactly see eye to eye as far as treatments. They want to go one route and want me to just do warm compresses and lid scrubs while I want to go another route with restasis, doxycyline, or other prescribed medications etc. Just to see if something helps. But like you said, I'm gonna have to steer myself in the right direction eventually when i'm older because nobody is gonna understand 100% unless they are going through it themselves. I'm very sorry you feel alone ( as do I ) but with this amazing forum its great to have many virtual shoulders to cry on. Are you better from when you first got diagnosed 3 years ago? I hope so Thank you.


Hey Littlemermaid,
I will check those websites to further investigate about rosacea. Thank you for taking the time to link that to me. Although, I will say its a bit harder to tell if I have it because of my darker skin but like you said it can have no skin signs. As far as diagnoses/observations the "doctor" I went to said I had MGD and that was causing dry eye like symptoms. That was all he said and told me to do compresses and lid scrubs. Typical. But I feel like I actually HAVE dry eye, not just MGD mimicking it. I feel like this because I can see dry patches in my eyes near my tear ducts ( not sure if that makes sense ) and I can't cry out my left eye which is my worse eye. And then of course, my other observations is my visual symptoms ( ghosting, glares, star bursts, etc.) Which he said was from my MGD. I guess my tear film is really unstable. Also when I blink I can see something floating up in my tear film where my cornea is... Don't know what that is. My guess that's meibum or something.. So yeah, lol lots of things happening at once. Thank you taking the time to read this.

Oh! and If any of you guys are American Happy Fourth of July!

[epicjinx]

I would like to say im 19 and had it tail end of 17, you will find something i find it hard myself keeping happy but I think I might get something eventually. Cant you see someone yourself? Without your family? I know what the family part is like. But remember this, stuff is being done aka research they already have a potential cure all for mgd and lacritin is good too and more stuff yet to arrive to. Sadly it's not on market right now. Just have faith, i loose mines but it helps to think if you get someone good they are bound to help you no matter what!

[DMGD]

Hi epicjinx,
I agree it's really hard being happy with this condition especially with seeing other people my age not even giving a second thought to their eyes. And its really hard seeing somebody by myself because 1.) I can't drive. I have my permit and was in the process of learning but this eye condition came up. And 2.) I think you have to be a certain age to go to the doctors office by yourself. Do you have MGD too? Thanks.

[littlemermaid]

DMGD, In UK, there is no minimum age for a child to see a doctor alone, so may be similar in US. Someone really should help you and go with you though

dry patches on eye surface - I know what you mean. Ours looked like an 'orange peel' surface on the sclera eventually. My daughter's eye surface got desensitised, bit like the skin toughening up, and I think the autonomic tear prompt was lessened. She could stare far too long without blinking. Over a minute. You could test yourself. Did they test your tear production with a Schirmer strip or similar? Did they say what your tear break-up time is?

something floating - and it's not floaters? is it same thing stuck on, same place everytime? is it a string of mucous? have you worn contact lenses?

ghosting, glares,starbursts - I would ask the doc to examine for changed eye surface curvature or keratoconus, just in case

Has anyone prescribed antibacterial drops? We did treat for demodex from time to time, which seemed to help.

Keep well. Very sorry to hear about your trouble. Your family's reaction could be fear. Are you doing MGD treatment and using regular lubricant drops? and not overdoing computer, phone etc?

[Ctrain]

Yo, DMGD,... LittleMermaid's last post was excellent...Way beyond my level of expertise concerning this subject...I'd certainly consider trying some of her suggestions...Oh yes, red , white and blue for sure...Bought $50. of fireworks from CostCo and going to have a good time in a couple hours with either my son or neighbors (if they want to be social for once...lol). Glad to see your spirits are up. Man, you've got a bright future...Never forget that. Good luck!

[khmedia]

"Are you better from when you first got diagnosed 3 years ago? I hope so Thank you."

Hard to say DMDG. Sometimes I think so other times I think it has got progressively worse. But everyone is individual. Just because I have had no relief to date doesn't mean the same template will apply to you! Keep the faith!

[Daniel2]

I feel you I'm 26 but had been with this problem for 5 years, my family has been supporting but I definately see them getting extremely stressed out about this. It has affected the quality of all of our lives. My eyes also burn all day, even writing this it's very difficult.

Just some advise on managing the floaters, I have uvitis coupled with my dryeyes but managed to almost completely eliminate floaters using Liquid MSN. It's the natural alternative to treating the floaters instead of steroids.
https://www.amazon.com/Vitamin-Steri.../dp/B00AMVVXFS