Being your own advocate

[kimby2007]

If I learned anything from this past yr with dry eyes is how much dry eye patients need to be their own advocate. I have seen specialist after specialist who were ready to just throw some artifical tears at me and let me on my own merry way. At every turn I learned that you have to push to get the treatment you need and deserve. I was once told that sclerals were for patients much worse than me. I think that was an ignorant statement because if dry eye is impacting your life than who can judge that you are not bad enough. Just a rant on Friday night but I want to push people to seek the care they need and not give up.

Kim

[brd888]

Kim,
I think as you progress into the depths of dry eye, this happens automatically!

It took me around 9 months of having dry eye to realise 1. It wasn't going to go away or heal itself. 2. The normal channels of health care had failed me. I therefore had to figure it out for myself or search for someone off the beaten path who could.

[rhad]

Kim, i agree with you 100%

rhad

[odydnas]

I completely agree with Kim. I think that this is also what makes the disease so frustrating...most of the professionals that you expect to answer our questions and help us are actually the ones that diagnose us incorrectly, are unknowledgeable about the products that could help us, AND on top of that, make us feel like we're imagining the pain.

Without this board, I would probably just still be putting in eyedrops every 10 minutes.

Also, instead of just advocating for good medical care, I'm just starting to learn to be a little more comfortable with asking for help from friends and family. It is difficult to be young and look perfectly fine, but then have ask someone to drive you somewhere because your eyes hurt, or ask other people to accomodate you by turning down the A/C or heater. I generally find it so difficult to ask for any help...gahhhh

[Helen26]

If I learned anything from this past yr with dry eyes is how much dry eye patients need to be their own advocate. I have seen specialist after specialist who were ready to just throw some artifical tears at me and let me on my own merry way. At every turn I learned that you have to push to get the treatment you need and deserve. I was once told that sclerals were for patients much worse than me. I think that was an ignorant statement because if dry eye is impacting your life than who can judge that you are not bad enough. Just a rant on Friday night but I want to push people to seek the care they need and not give up.

Kim

I totally agree. I have now seen 4 so-called specialists in dry eyes in the UK and none of them will give me anything more than artificial tears and plugs. Everything I suggest (including cyclosporine, serum drops, steroid injection, AMT) has been dismissed (if not laughed at!) and I've been told that they are only reserved for severe cases. I am in pain all day every day yet apparently my eyes are not clinically severe enough for any doctor to both with!

Helen

[jlg_uk]

I agree with this thread, and when Helen says:

I totally agree. I have now seen 4 so-called specialists in dry eyes in the UK and none of them will give me anything more than artificial tears and plugs. Everything I suggest (including cyclosporine, serum drops, steroid injection, AMT) has been dismissed (if not laughed at!) and I've been told that they are only reserved for severe cases. I am in pain all day every day yet apparently my eyes are not clinically severe enough for any doctor to both with!

Helen

This sounds similar to what I've experienced as a fellow UK sufferer. I don't know how much of that was NHS related, but people just don't seem to think it's a big deal if there's not something sight threatening. Yes - sight threatening problems are important and a priority, but chronic DES that badly impacts on your daily life isn't exactly something to be palmed off with drops you've already tried. Shame you can't give your practitioner 24 hours of your symptoms - not to be cruel, but just so they understand what it's like.

[stella]

What really gets me is to be told that it is not serious so go away and forget about it ---
neither is toothache serious but nobody would dream of telling you to go away and forget about it -- In fact with toothache you can always get emmergency treatment
We have a lot of educating to do !!!