HealingWell
Search Close Search
☰

Please help me understand.

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/1/2009 5:09 AM (GMT 0)
Hello everyone, my name is Ryan.

I am not suffering from pain but my girlfriend is and I need some help understanding.
She suffers from Meibomian Gland Dysfunction. This is a condition that causes her tears to be dysfunctional which causes sever eye pain. I know it is difficult to understand. Her doctor describes it as running your windshield wipers while your window is dirty and it is not raining. Eventually they will cause very small scratches to the window and be very damaging. This is what blinking is like. My girlfriend describes her eyes and as being like there is soap in them all day long and that she is blinking over crushed glass.
Long story short... she has been suffering from this for over 3 years and has just recently found an eye doctor who specializes in this condition and has a cutting edge way of treating this condition. She has started the treatment and is about halfway through. She is feeling some improvement but is still in severe pain.
Sounds good right? WRONG!!! she is depressed as ever. She is still in constant pain which is totally congruent with her stage in treatment. She is very scared that this wont work and that she will be in constant pain forever. Her pain has caused her to fall into a depression which she is currently taking anti depressants for, but they are not really helping. In the first couple years of this she just dealt with it. She was functional, was able to go to work, go out, and have fun. However now she just lays in bed and cries. She is able to go to work, but that is about it.
The way I see it is this totally sucks, but she found a doctor who gave her a logical diagnosis and who has a treatment. She is doing the treatment and is now half way to recovery. But... unfortunately she does not share this view. She constantly dwells in the past, wonders what she did to deserve this, focuses constantly on her eyes and pain, wonders why she is not feeling better yet, is worried that she will never feel better, she thinks her pain is a 10, totally victimizes herself, is constantly poor me-ing, and thinks that it doesn't get any worse.
Now... I am sure I sound like an insensitive ***hole and I apologize. But... I have read a lot of your posts and it seems that a lot of you are far FAR worse off and if you were able to be functional and go to work it would be amazing. When I tell her this (that are people far worse than her) she gets really pissed at me. I tell her that her attitude is terrible and if she changed her attitude it would drastically improver her quality of like. Again, my words are not taken the way I hopped.
So... Please HELP. What can i do?
I have only been in severe pain once and it was only for a few hours so I can not relate.
Can a positive attitude make a difference or is it impossible to have a positive attitude? I get really sick of her boo hooing and this causes a ton of stress in our relationship. Whenever I say she needs to change her attitude she just gets pissed at me and it pushes us farther apart.

I need help. And... if I am being an insensitive jerk please be honest and tell me. My feelings will not be hurt.
Posted 7/1/2009 6:15 AM (GMT 0)
It sounds like to me that your girl needs to get some counseling, maybe she needs to talk to someone other than you. An outside party does wonders. That way she can vent and maybe she'll start feeling better in every way.

HARA

Posted 7/1/2009 6:21 AM (GMT 0)
Thanks Hara. I tell her that all the time, but all she does is get mad at me. Seeking counseling would mean she has a problem and she blames the pain for everything. Her logic is the pain is causing all of her problems and if the pain is gone all of her problems will be gone. I however disagree with this.

Am I wrong to assume that a change in attitude will help? I am not implying that is will make the pain go away, but wont it make ones life better?
Posted 7/1/2009 6:40 AM (GMT 0)
At times I get a little down and then I get more down and then I have a "pitty me party" and then I post on this site and I start to feel better just knowing that there are others out there that are just like me.

Just be there for her as a friend and just listen when she starts to talk. Don't say a word to her just nod your head and give her a hug if she will accept one. It's hard seeing someone you love going through what she is going through.

HARA

Posted 7/1/2009 7:03 AM (GMT 0)
Ryan, I can relate with the depression as many of us have or are dealing with it. It comes with the issues of chronic pain. It is also common for people to be sceptical if they have dealt with the pain for a period of time. She has probably tried several if not many things and none of them have relieved the pain and in fact it has gotten worse. I have struggled with CP for 11 years and I know that looking for hope can be difficult. You are right that there are many people worse off than your girlfriend but  she is dealing with them she is dealing with herself.

The depression part wants her to be isolated and hopeless. When the suggestion came about a counselor, and you said you have told her that but she is hesitant as that means she has a problem. I would suggest that whoever is prescribing her the anti-depresents address this with her. I hope that she is being truthful with that doctor. It is common to have a therapist or a counselor involved. It does not mean that we are "broken" or "weak". It means we are real and have real problems and talking to the right people can help. There is not much you can do until she decides to make the step. I have accepted the fact that I will not live pain free the rest of my life. Ok, now lets move on. I struggled with that but I had to accept as well as seek the right help. You can try and encourage her and even be willing to go with her. But in the end, she has to be willing. That is a big obstacle for her to get over.

You can even share this forum with her and let her converse with some of us who have been there and have found ways to function and live a life of hope and purpose even with pain. Ask her what she has to lose. I hope she will allow someone to begin influencing her to overcome the depression. Her quality of life depends on it. I hope we are able to give you enough to have her open up.

Posted 7/1/2009 7:35 AM (GMT 0)
thanks fatherjohn. i appreciate your insight.
in terms of therapy... she has seen a few. you see my girlfriend is an Licensed Clinical Social Worker and can practice therapy herself. She has a BS in psychology and a Masters in social work. She is smart girl and can manipulate a therapist who is not on their toes. she started to see her psychiatrist for therapy and it was actually going well in my opinion, but because she is so vague with her answers and does not open up he began to totally psycho analyze her which pissed her off so she stopped going. If the therapist does not completely buy into her helplessness an enable her negative attitude she thinks they are not helping.

again... she is not dying. she has been diagnosed, there is a cure for her pain, and she is receiving treatment.

i am sorry. i am very frustrated and i am venting. i have seen a loved one die of cancer and have seen chronic back pain where the person could not even get out of bed. her pain is visibly nothing like what i seen or read on this forum.

like you said fatherjohn you have accepted the fact that you will not live pain free and you are moving on. i want to realize that she will live the next few months in pain, have faith in her treatment, and move on. unfortunately i an insensitive jerk for having the audacity of not understanding.

i am at a loss.
Posted 7/1/2009 7:45 AM (GMT 0)
SugarspunZ,
Welcome to the chronic pain forum of Healing Well. I want to commend you for trying to learn from others who suffer from chronic pain so that you can better understand and help your girlfriend. You've been given some good advice, and I agree with the counselor suggestion. It might help if a therapist who specializes in helping people cope with pain is suggested, because that's what is causing the problems in her (and your) life. Yes, attitude can be very important, but it's a long road for some of us (myself included) to make some peace with changes we don't want in our life. So it's a delicate balance, and timing is important.

Fatherjohn's suggestion of having her join us here is a good one. She may then be able to get some support and see how people cope with pain in a variety of ways. And we have good days and not so good days with both pain and coping.

Ultimately she will have to be wiling, as Fatherjohn says, and if over time she's not, you'll have to make your own decisions. Try for now not to tell her what you think she should be doing, as that's not helping either of you. Ask her instead to help you understand, as best as you might be able to even though you haven't experienced it. It's a huge loss, and having something as basic as vision affected (we have some others here with problems affecting their vision) is very basic to life. Not only does she have the pain, but the loss probably of some of her vision. A double whammy. She needs to be able to grieve, but then the choice will be hers as to whether she makes the best of what she's been handed (and who knows, maybe this will be cured or substantially imrpoved) or whether she stays in a victim mode. I certainly hope she won't, but she needs some time.

I hope she gets some help, but you've done a wonderful thing by trying to learn. Others will come along with more suggestions, I'm sure.

Again, welcome.

PaLady
Posted 7/1/2009 8:03 AM (GMT 0)
Thanks PaLady. just to clear things up her vision is perfect. see our Meibomian Glands make a lipid or oil that is an ingredient in our tears. it helps lubricate our eyes and enables our tears to coat and protect the eyes. if this lipid or oil component is missing the tear film quickly evaporates leaving the eye surface unprotected.
it has no affect that i have read on the vision. it just can cause sever burning of the eyes.
Posted 7/1/2009 8:31 AM (GMT 0)
Sugarspun,
Well, if my eyes were burning I would think it would affect my vision. Think about it. Now this is purely opinion on my part as I'm not a doctor, and don't know much about her condition. Just think how you might function if your eyes were burning a lot or all the time.

Have you ever asked her how it affects her? The nitty gritty details of it. How long could you read with eyes that burn - even if it's not all the time? And what losses come with that? I think asking her about not just the pain but what she feels she's lost may help both you to understand more, and her to feel understood. And that can't hurt your relationship.

Just some thoughts. Again, I think it's great of you to come here to learn.

PaLady
Posted 7/1/2009 9:00 AM (GMT 0)

Welcome Sugarspun,

Your girlfriend is definately in need of professional help.  It sounds like she has a good ophthalmologist on board and is making some headway in the treatment of her "tear" problem.   Has she considered getting a pain evaluation.  Many teaching institutions offer a well rounded pain evaluation - not just a visit to a Pain Management Specialist.  Obviously, in her mind, what she is feeling is debilitating and is having a negative impact on both her physical and emotional well being.  A full evaluation usually involves a team approach and includes a visit with a psychiatrist or psychologist that specializes in pain management, as well as a Pain Management physician and/or someone from Physical Rehabilitation (if necessary) .  There are many ways to treat pain (actual or perceived).  Medication is only one aspect.  Medication can be is the form of antidepressants - some even have FDA approval for both mood and pain (e.g. Cymbalta), narcotics and non-narcotics, and a wide array of other medications like anti seizure meds that have pain reducing properties (e.g. Neurontin and Lyrica),  The nice thing about team approach is they can also offer coping skills, behavior modification and biofeedback.  It is important that she seek medical intervention so that she can get a hold of her pain issues and not let them take on a life of their own.  Remind her that she needs a evaluation from an outside professional.  Even though she is a trained social worker, she needs the help of individuals trained to deal with pain issues.  Besides that, no one is objective when the are assessing themselves. 

Good luck.  You sound like a caring person who feels like your friend may be experiencing more issues  than just the treatment of her eyes.  You will have to tread lightly when discussing this situation.  It is important that she does not get caught up in that loop of poor me - why me - my life will never be the same.

Please keep us posted about how things are going.

Posted 7/1/2009 9:09 AM (GMT 0)
Ryan, PAlady is correct. There are several issues going on and only one of them is pain from the eye condition. There could be various other issues as well. These are the issues that she needs help with such as what she might feel she is loosing. I was a social worker and eyes are very important. I had to read my clients by looking at their eyes, body movements, the type of eye contact they allowed or avoided. She may be fearing that she will loose everything she has worked for.

I will share something that I hope makes sense. I teach, at the school I administrate,  that there are times when we need to comfort the afflicted and there are time when we need to afflict the comfortable. It takes wisgom to know the difference. There are good therapists out there that should be able to read your girlfriend and be willing to call her on the lack of disclosure or seriousness.

You are to be commended for all that you are doing to help her. There is always someone on this site, ask her yo join you.

Posted 7/1/2009 12:49 PM (GMT 0)
Ryan,

I know how she feels, some of us dont vocalize it but we feel that way sometimes, like it just doesn't matter, the pain will never end and you will never be healed. We all have different issues, some of us have been going through pain for months and feel like that and others (like me) have been going through this for years. I cant put myself in her shoes because every one has a different pain threshhold. I too have dealt with depression so I understand what she means, they wanted to put me on all kinds of anti depressants and I kept telling them I am depressed because of always being in pain, if the pain stops I will be fine, so I can relate. Sometimes I get real down and my husband will pull something up on the internet of someone dealing with unimaginable pain, he doesn't say to me look you could have it worse, he just shows me the story and says to me "I am so glad you dont have that!" and it makes me think that I could be worse. Now as far as you sounding like an A**hole, yes it sounds that way, but I know how hard it is to be on the other end, I did it with my father, and you hate to see someone you love hurting, and then of course there is the anger, you dont want to be but sometimes it happens, mostly because you want the person you used to have back and there is nothing you can do about it. I wish her the best of luck and you too, maybe you could get her to join here and at least she would have a forum where she can vent without people judging her.

Good Luck

Smoochie

Posted 7/1/2009 4:13 PM (GMT 0)

Ohhh Ryan, 

I see both side of the coin on this one.  Not only do I have CP, but my husband does tooo.  He was in a motorcycle wreck in 1989 and he still have CP.  He's never to my knowledge taken depression meds ( I have, with no help, I'm tooo goofy and I dont need them)  but he will go through the pitt me stages.. and I have tooo.  But we are able to call each other on them.  We have been together for well 22 years this month and I was there for him during the wreck, and he for my back.  We (and prolly no other) can call each other when we are being a butt-hole and it brings the other back into check.  I have problems at times with infections in my eyes and it will drive you nuts, I can understand where she is coming from, but with her being soo close to the problem she can not see the forest for the trees... does that make since????? She's only seeing I hurt and been hurting and it will never stop.  You might need to go to her appointments with her and tell the doctor in front of her your concerns, she might be upset, but in the long run it might be the best thing to do.  Tell the doctor to send her to someone and then you go if you can, or go every other time.  Just so you know that she's not holding anything back and so does the doctor.  I have to do that with hubby, hehehe he's not figured that out on me yet ... shhhhh don't tell him LOL

I wish you and your girlfriend lots of hugs and prayers, and I do not think your a butt-hole, I just think your in the need of venting too, she might be the one in pain, but you are the support and YOU need support tooo.

Good luck and talk sooon,

Trouble

Posted 7/1/2009 5:09 PM (GMT 0)

 

                            Dear Ryan,

            Hi there! My name is Dani. It is very nice to meet you. I am glad you found Healing Well Comminuty. I hope, over time, you will be able to get your friend to come here too. This is a great place for support & knowladge.

            It is hard for me to respond to this post, but it is important .. here goes.

 

            I, too, did not handle pain in my life well. I was very angry. about everything. Why did *I* have to be in chronic pain? Why not that poo brain drive like a maniac on the free way? Or the seemly hundreds of folks who I 'thought' could certianly benefit from my pain... ANYONE else but me. Not me. *I* wanted to live. *I* had planns. *I* was too strong to let pain get in the way.

           Now here comes the dangerous thinking.

           If I ignore it , it will go away. Noone else believe me maybe im only in a litttle pain and whinning. *I* am not whinning. My friends are abandoning me. They dont love me. Im not loved. Im not good enough to not be in pain. I dont deserve a pain free life.

              This is that part that folks recoganize... often too late.

            I dont want to get out of bed. I dont want to smile. I don't want to eat. I dont want to see the sun rise... The pain is too awfull. Everything is pains fault. If pain would go away I would be "me" again.

 

           And here we have behaviour therapies. I saw a pain psychologist for a very very long time. We re defined "Me". We worked on physical responses to pain, mental responses to pain, emotional responses to pain. Over and over again until my responses became unconsciously automatic. I was taught every aspect of pain. I was taught Bio Feedback and completly changed my enitre body's respons to pain. Peroid. Every fiber of who I am has benefitted from Miss Mary the pain psychologist. She is/was the MOST important part of my pain management. Her skills coupled with other treatments... I'm not saying I "like" my pain.

Its a part of me. Not what defines me.

           But who got me to Miss Mary? My spine specialist got grumpy right back! To me?!? And off I went to meet Miss Mary for the first time. So .. It took someone who was not (at the time) connected to me personally to tell me. "You need more tools for living."

           Hopefully I stayed on toppic. I really am very glad to meet you. I hope over time perhaps? You can get your friend to come aswell. Having support group is... very much needed.

          And hopefully my new friends here on the chronic pain forum dont think im weirdo smilewinkgrin

    *warmest huggs*

dani

Posted 7/1/2009 9:16 PM (GMT 0)
Ryan,
I wish I knew what to say to you, but if she's not willing to seek councelling, any advise we might give
would probably go in one ear and out the other..I have a chronic eye infection which has scratched my eye's
and well, eye therapies can take awhile to take hold and I'm still hopeing for one to do so.. You might want to
ask this specialist of her's, how long till she has a complete cure and will it be a complete cure and will her
scatches get better?? Long term pain conditions effects/affects the whole family and sometimes even the smartest of people
don't realize they need help, so it might take an ultimative from you for her to really know how it's hurting you as well..
Good luck in what you chose to do...
and I think your awesome for trying to get the help...
(((((((((((((((((((((((((((((((((((((HUGZ))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 7/1/2009 9:38 PM (GMT 0)
Dani,
I just wanted to comment that I thought your post was great! It really shows how we slide into a deeper depression and sense of helplessness.

Ryan,
Somehow I missed the post where you said your GF was a licensed clinical social worker. Tell her there are many of us on this forum with who are professionals, including at least one with the same letters after her name (ahem, not going to identify who but take a guess).

Sometimes we can think because we have cognitive knowledge of something that makes us somehow immune to the total package of psychosocial issues related to chronic pain. And unless she's specifically trained in pain management, she may not know many of the techniques she can employ. It ultimately will be her choice as to whether she's going to accept that even we professionals need help, or stay stuck with her pride or whatever may be keeping her from seeking help. Sometimes if you're in a small community you may know a lot of the other therapists, which is a problem, but even if you have to travel a bit (just like we travel for a lot of pain management treatments) it's worth it. There will only be so much you can do, though. Try to work with the situation awhile more, but in the long run if things don't change as I said earlier, you may have to make your own choices.

Hope this helps a bit.

PaLady
Posted 7/1/2009 9:46 PM (GMT 0)
I have found that many people with chronic pain become very depressed and bitter, and some of them self-destruct by drinking a lot of alcohol or doing other destructive things. I myself have been pretty happy most of the time, despite daily pain that has often forced me to be bedridden. My trick for staying happy is to do things I enjoy, any time I'm able. Sometimes this means watching TV, playing video games, or eating "comfort foods" such as ice cream -- anything that totally or near-totally takes my mind off of pain for even a few minutes. Sometimes venting about pain is helpful, while sometimes putting it completely out of mind works better. But just sitting around doing nothing can make a person dwell on pain and become very unhappy.
Posted 7/1/2009 10:16 PM (GMT 0)

Hello Ryan and welcome to Healing Well. I applaud you for seeking out ways to help with your girlfriends's problems. Obviously you care a great deal for her. As you can see there are many of us here in this forum dealing with pain every day, trying to cope and get by. We come here to vent, learn new tips and pointers that may help us out with our situation. The life of a CP patient can be a lonely life no doubt, but its like anything else we are handed in this life, its what we make of it.

I really think you girlfriend is in dire need of professional to learn how to come to terms with what is going on in her life. Because we may need help from time to time does not mean that we are weak people.  I think when CP first hits alot of us we do tend to concentrate more on the pain than anything. But, at some point you have to make decisions on how you want to handle the pain and how to make a new life for yourself it comes to that. I never want to give into pain, ever. In many ways I have already lost alot of time from my life that cannot be given back. Instead I chose to go forward, not backward.  It sounds like you are having a very difficult time getting her to accept any kind of recommendations at this point. Does she have family close by that may be of help, are they aware of how bad things are going for her? What about friends, anyone there that may be able to help. I will only say this, if she is not willing to help herself then no matter what you attempt to do for her, its not going to be of much help. Now some of the people on here may disagree with that statement, but thats fine. No one can be forced to do anything. But, in all honesty she has to be willing to help herself.

She is very lucky to have you wanting to help her. Many times, friends and family tend to step back after awhile because they do get tired of hearing about how bad it can be. It does get old after awhile, I don't care who it is. I have lost many friends due to CP mainly because I was not able to participate in alot of the things that we normally did. But, I did not expect them to stop everything for me either, that would have been unrealistic and unfair.

I really do not think I am being of much help here to you, except to say I think its wonderful that you are trying to find ways to help her. Depression is so common with CP, they kind of go hand in hand. She needs to learn somehow to accept things and move on to the next level, but this is her decision not yours.

Good luck and please hang out here with us. We have a great group of people on this forum and I am so glad you found us.

Posted 7/1/2009 10:26 PM (GMT 0)
Hi Ryan,

And welcome to the chronic pain forum of Healing Well.  Like others have said, it is commendable that you have come here in an effort to help your girlfriend who is in chronic pain.  You are a true gentleman.

My daughter is a LCSW and I am a retired RN and personally, I feel that the professionals are the first ones who need treatment usually.  The healers need healing too!! Both of my daughters and I have been in therapy before and it has helped tremendously, so I hope she decides to explore that area.

I wish you luck and also hope she decides to join us here on the forum.

God's blessings.

Lindaloo

Posted 7/1/2009 10:29 PM (GMT 0)
Lindaloo,
I didn't know your daughter was an LCSW!! Cool!

Most people don't even know what "breed" we are! LOL

PaLady
Posted 7/1/2009 11:57 PM (GMT 0)
Hi Ryan,

As a lot of others have mentioned, depression is a very common "side-effect" of chronic pain. It is something that I, along with many others here have been fighting against. I know that my depression certainly doesn't help anything, and probably makes things worse. I do see both a psychologist (therapist) and a psychiatrist, and it does help to be able to talk to someone who is unbiased & can help present strategies which you can use to manage both your pain & your emotional state (there are actually people out there called pain psychologists, who specialize in providing therapy to chronic pain patients). I'd also suggest that you try to push her to see/talk to someone. Just because you see a therapist or a psychiatrist, doesn't mean that you are crazy, or that the pain is "all in your head," far from it! But they might be able to help he with her attitude & let her see the positive things in her life, instead of dwelling on the negative. Feeling self-pity is okay for a little while, but if you are not able to get over that, then it will make everything much harder in the long run. I know that it isn't easy to maintain a positive attitude all the time when you are in chronic pain (I actually suffer from severe eye pain as well, although of a different type & from a different cause), so you just need to do the best that you can.

I do think that it is often hard for "outsiders" to see & know what is going on inside of the head of someone in chronic pain, especially if they are depressed as well. It is really hard to live in constant pain & to learn to adapt to this "new life." And there is the ever-present underlying fear that this will never go away, especially if nothing seems to be helping. I think that that is just part of human nature. The most important thing that your girlfriend needs from you right now is support & love. You don't have to baby her, but just let her know that you are there for her anytime she needs you. Everyone's pain is different, so it probably won't help to tell her that there are people out there in worse pain & worse situations. This is probably true, and she knows it, but she really just needs people around her right now that are just concerned about her. Sometimes this may be a shoulder to cry on, or moral support at a doctor's appointment. She just needs to know that she is not going through this alone. I think that with the combination of your support & proper treatment of her depression through counseling & meds (and yes, sometimes it takes many different meds & many months to find the med that works the best for her), as well as management of her pain (through medications or other modalities, such as alternative therapies, like acupuncture, osteopathic manipulations, or homeopathy), she should be able to live a much more functional, happy life. It won't be an easy process, or a short one, but improvement is definitely possible.

Best of luck to both you & your girlfriend!

Skeye

Post Edited (skeye) : 7/1/2009 6:00:54 PM (GMT-6)

Posted 7/2/2009 1:14 AM (GMT 0)
thank you everyone for your kind words, insight, and support. :-)
Posted 7/6/2009 10:48 AM (GMT 0)
Ryan, I just wanted to give you a pat on the back. I admire you for sticking it out with your girlfriend and for wanting to get more insight to her pain. It speaks highly of you. And it shows that you do care for her and want to get her help.

Depression and chronic pain go hand in hand. Ofcourse you can have the depression without the pain, but I don't think you can have the pain without the depression-in some sort of way. So her feelings are hers. Depression is something you can't turn on and off like a light switch. There are many times I only wish it were that easy.She is a professional. She knows all of this and tons more. And if she were in the other chair, listening to the patient, she would know the exact things to tell them to help them. She isn't seeing things like this right now. I do hope that you are able to get her to go to counseling. And it needs to be someone who specializes in pain.Be careful on how you approach it next time. Choose your words real carefully.

Listen to her. Let her talk to you about how she feels. This is real to her, all too real. Just be there for her. And let her know that you are there for her. That will help.

Ryan, you have a full plate. It is hard to watch those we love suffer and hurt. Hang in there.Tell her about this forum that you "found" and ask her to visit for a couple days. It may encourage her to post if she feels up to it.

Give yourself a pat on the back. You seem like a great guy who cares deeply for your girlfriend.
Anice
✚ New Topic ✚ Reply