Dealing with family

[littlemermaid]

Not sure what that has to do with family.

Justbob, sorry, my friend, just saw the word 'personal philosophy' and it set me off... When I put Medical Records in a file with a short summary, suddenly the family thought it 'looked official' and they didn't have to waste time listening, which was better. Otherwise it was just me talking 'blah blah... medical terms... doc thinks... I've read...' + instant 'switch off'. I printed out short versions of some treatment protocols listed above and put in a second file. This was also for eg GPs who didn't Google what their local clinical referral pathways were. Still no one in the family helped or showed interest or came to appointments. It's been easier and less painful not to expect it. I guess we should make sure we do our duty to help them as they need us. The kind messages and info we had from fellow-sufferers has been a wonderful safety-net. You're not crazy. You have my great respect for what you've achieved. Keep looking for what you need. We all work on this together. Be safe, bro. This is an important and interesting question. Hope you get more replies

just looking for a few people to say how their family reacts etc.

[No tears in ATL]

That would require more pc time though, I doubt they have a magic solution to human nature.

You are already on the computer, it appears....

Any comments from people on what their personal philosophy in this respect is or how their family act/think about your problem most welcome to convince mine I'm not crazy, thanks!

I think this is what we are responding to here - convincing your parents you're not crazy. Simply summed we were trying to give advice on how to inform your parents that you're not alone and dry eye is a serious issue. I think we were trying to be constructive rather than criticise our families! From their point of view this is exceptionally difficult, if they could click their fingers and make it better they would - but for many it's hard to understand because it's a condition that gets very little publicity or attention. They snap because of frustration, so the best thing to do is take on board the constructive advice given here and see if it works - no harm in trying. Like I said, if they simply refuse to read any info you've given, or refuse to accept your condition when you've sat them down and tell them that yes, it's difficult to understand but it's very real and you'd appreciate any support (as simple as a lift to the doctors or the reassurance it's going to be ok from time to time) - then you may have to accept they won't support you in the way you wish. Understanding works both ways, and sometimes to make others empathise with your situation you need to see where they are coming from.

These are a few things I said to my parents:

'I know it must be so frustrating to not know what to do - or how to help - but I would very much appreciate it if you can trust me when I say this is greatly affecting my life.'

'Todays been a bad day for my eyes, so sorry if I'm a bit low but it's causing me a lot of physical/emotional pain.'

'I know you can't solve this for me but I appreciate all the support you can give, even if it's just telling me everything is going to be OK'

And in return make sure they know you love them! Through my dry eye journey I made my mum yell and cry... It was painful because she couldn't understand what was going on. I don't blame her though. You've got to be the diplomat in some cases and try and make things easier so you can both coexist in harmony. So never get angry when trying to explain yourself to them, they want to see you get better too.

[justbob]

As far as docs and family are concerned, I don't use anything except UK NHS, PubMed/Medline (US National Library of Medicine), and American Academy of Ophthalmology websites. There's enough scary stuff on there and they think it's more 'authentic'.

Probably refuse to read, or say that isn't me or it hasn't happened yet and might not happen.

My family hold Consultants' letters in high regard too (we have various diagnoses for all occasions).

We've all seen doctors who we feel didn't take us seriously, easy to cherry pick those.

So many personal accounts here to show them.

I know, but long winded, they'd probably lose interest after half a page (and not good for me to have wasted my time finding all of them).

This thread has gotten complicated, really I was just looking for a few people to say how their family reacts etc.

[littlemermaid]

As far as docs and family are concerned, I don't use anything except UK NHS, PubMed/Medline (US National Library of Medicine), and American Academy of Ophthalmology websites. There's enough scary stuff on there and they think it's more 'authentic'.

I really think it would help if your family checked out the NHS website, NHS Clinical Knowledge Summaries, and AAO Preferred Practice Guidelines, to get an idea of normal treatments. One issue is people have no idea things may get worse if left untreated. My family hold Consultants' letters in high regard too (we have various diagnoses for all occasions).

Some families can't go the extra mile, and maybe we're all guilty of that if we think about how much help we've given relatives, and to get real understanding, we've been better off with equals. Depression and addiction are also very difficult, painful, or impossible for family to handle without training, otherwise they can resort to staying away or what feels like constant criticism.

they think I'm obsessing over my eyes and other people don't do that

So many personal accounts here to show them.

Haha, you misunderstand me - I meant how do you do this? Rhetorically as it was followed by my answer/advice of getting them to see online how it dry eye works/effects others.

I wouldn't necessarily get them to read this family focused thread in particular (as no one likes to be talked about for not understanding!) but maybe point them to a few that closely relate to the actual physical issues behind your eye problems or a generalised one highlighting the emotional/physical issues it brings.

[justbob]

or try and do your best to calmly convince them you are suffering more than they suspect. How do you do this?

By starting a thread like this one where other people can post their family experiences (and how aggressively you try to find solutions to your dry eye) which my family could read?

Hi justbob,

What little mermaid is saying is based on the advice given before - if you do seek support from self help groups (those who experience chronic conditions and have trouble getting their family to understand)- then it's important all the support and info gained or swapped is positive. It's easy to fall into a negative trap thinking your family doesn't care, no one can help and that's that. It's about taking constructive advice and absorbing the info which could benefit you.

As you know you're not alone in facing a family that doesn't fully grasp the situation - mine didn't understand too. It doesn't mean they don't care, they just don't fully understand or grasp the situation you're facing. It's a difficult challenge - one where you either accept the fact they are not going to be supportive, but lean on others (like on here and the aforementioned self support groups) or try and do your best to calmly convince them you are suffering more than they suspect. How do you do this? As we know in your situation your doctor hadn't been very helpful. Maybe convince them to take a look at this forum - tell them there's a whole online world dedicated to the eye pain and emotional turmoil, I'm sure there's a section of this site that summarises the issues caused by dry eye. If you can't convince them to look then you can only tell them as calmly as you can that they will just have to take your word for it and trust you when you say that you're not overreacting, and you'd appreciate it if they can bear with you while you find a solution/s.

It's hard to give advice on this as I'm sure you appreciate every family is different. Only you knows yours best so it's about finding the best way to get them to understand. They may never show the support you want but if can manage to get them to stop criticising that'll make life better for you. We wish you luck!

[justbob]

Not sure what that has to do with family.

[littlemermaid]

In self-help groups, it's been most effective to hang out with people who are solutions-orientated and positive thinkers. Some people haven't learned mental health techniques yet, and they can make you feel as if you're dragged into negative thinking. Bad if you're already depressed or stressed. Mutual respect and responsibility is important because they are for equals and no one is 'in charge'.

[justbob]

What might be helpful to you is to participate in forums with people who suffer from conditions such as fibromyalgia, chronic pain, and chronic fatigue syndrome, and ask some advice there.

That would require more pc time though, I doubt they have a magic solution to human nature.

[No tears in ATL]

Sufferers of chronic pain have similar issues, I think. Because the pain isn't visible, people do not believe it exists.

What might be helpful to you is to participate in forums with people who suffer from conditions such as fibromyalgia, chronic pain, and chronic fatigue syndrome, and ask some advice there. I can't imagine what the early sufferers of those conditions must have gone through, when doctors assumed it was "all in their heads."

I mention dry eye just occasionally at work when it comes up, and I don't get any sympathy either. Not that I want sympathy, but people just don't get it. "Don't you have drops for that?" Ugh.

[justbob]

It can help if you take a family member with you to your appointment with your ophthalmologist (unless your ophthalmologist is hopeless).

I did, but it was for a different eye issue and when MGD developed it was marginalized by doc (not as bad as yours sounds), he eventually dismissed there even was a problem. Current ophthalmologist accepts there is at least.

I haven't told my family. I think they suspect I have depression, because I am not as social or active as I used to be and I get moody or stay in bed for days when I get flare ups I'm too ashamed to admit my problem. Even my best friend who is an optom, doesn't understand why 'a bit of dry eye' is so debilitating.

That's awful .

I think it's the worry that your eyes are getting worse and it's irreversible. Dry eye is damm painful too. I get migraines from it.

But they do get worse based on hygiene and behavour. I just get told it hasn't happened yet, even though I know it already has. I'm encouraged to wait till things get worse, but the attitude is already it's a perm disability where nothing can be done!

Anyone else accused of obsessing over their eyes (worry or finding solutions) instead of just getting on with life?

[Angela810]

I haven't told my family. I think they suspect I have depression, because I am not as social or active as I used to be and I get moody or stay in bed for days when I get flare ups I'm too ashamed to admit my problem. Even my best friend who is an optom, doesn't understand why 'a bit of dry eye' is so debilitating. I think it's the worry that your eyes are getting worse and it's irreversible. Dry eye is damm painful too. I get migraines from it.

I guess blogging on here is a start to admitting my issue. I have been reading posts on here for almost 2 years and only recently have had the guts to post up here (sorry off track there)

[lizlou29]

It can help if you take a family member with you to your appointment with your ophthalmologist (unless your ophthalmologist is hopeless). My mum came with me to an appointment (even though I was 29 at the time) and my ophthalmologist used a camera and computer to show her the severity of the MGD. He showed her what normal MGs should look like. She saw the schirmer's test strips sticking to my eyes and the nurse saying how they very rarely see that happen. After that I think she understood a lot more and the rest of my family are very caring and understanding. I think I'll always have an issue with making friends understand. Nobody gets why you can't go out for a meal, to cinema etc because you've got dry eyes. I get the "are drops not helping?" question even though I've had dry eyes for some time now.