# Chronic Pain and Mental Illness in Marriage



## enoonami

Hi. My wife has a condition called EDS (Ehlers Donlos Syndrome). It is a connective tissue disorder that is said to be more painful than cancer. We've been married for 15 years and the last 5 years has been the worst with her bed ridden for most of it recovering from 3 failed surgeries and then getting into a car accident that caused lower back injuries. Her pain is legit. Unfortunately, we live in a society where pain medication is heavily regulated and under-prescribed but recently the same people who put together the guidelines are now writing about how how the guidelines have been misapplied to people like my wife. The doctors have her over twice the limit before they have to start writing up documentation to the DEA to justify the amount she's on but we finally found a doctor who understands her condition. 

The goal-post in our relationship has been constantly moved. Just one more surgery, just one more treatment, just one more dosage increase. I gave up hope 5 years ago for any type of normal life. 

About a year ago I got on anxiety medication because I was having panic attacks. They felt like heart attacks and I went to the ER several times before I accepted that it was panic attacks. I used to think panic attacks were all in a persons head but I realized they manifest in a very real and physical manner. The doctor said it was all due to stress. 

My mental state has been rapidly deteriorating because all we do is argue. My social level is 100%, hers is 20%. I understand this and I ask her for 10% effort in living a normal life. Rather than going out with friends every weekend, I ask her to go out once a month, then once every couple of months, then months go by. We are lucky that we've established passive income for ourselves so we don't have to work. However, we do have to spend about 4 hours per week on our businesses which we are both required to run. I don't wan to reveal the nature of our businesses as to try to maintain anonymity here. However, let me just say that I can't find anyone else to do her job and she would be mortified if I did. 

I'm losing my mind. My mental state has deteriorated and this isolation is killing me. She is very jealous if I go out with friends because she knows just as well as I do that I would meet someone and create an emotional relationship with. I have to give her credit that she is OK with me getting the occasional call girl to meet my sexual needs but it's getting harder and harder to hide the fact that I'm emotionally starving 

I went out with some friends and I was trying to find a parking space at the front. My female friend, in 6 inch thigh high boots looks at me and says "umm, why don't you just park back there? What's wrong with you? I can walk." It was that moment when the lack of normalcy in my life hit me like a ton of bricks. What we're living through is NOT normal. 

She's in her mid 30's and I'm in my early 40's. No kids and we live in a big city. Lots of music festivals and activities. I'm also a musician and I haven't been able to practice my craft, much less network to get gigs and performances. 

Friday and Saturday nights are usually spent arguing. I get overloaded. 90% of our conversations revolve around medical stuff, 5% about how much she's hurting, and 5% around what our businesses need. The stress throughout the week makes the weekends just daunting. 

Yesterday, we spent all day at doctors, then at the pharmacy, then getting lab work. At 9pm, I just lost it when she mentioned MORE medical ****. "Hey, do you want to go out and eat? I am feeling better and I'm not having to use my cane as much". 

I know I shouldn't get triggered by bringing up her cane,... and I don't. I was just overloaded with medical stuff and I am starving for some normalcy. "Hey, want to go out to eat". We spent the next 8 hours going back and forth about the last 10 years and how we've hurt each other. FINALLY, after that time I got to tell her that I'm overloaded with medical stuff. She goes into this blank place with a monotone voice "yes, sir, you are overloaded, I understand". 

Tonight was the same song and dance. The conversation started about going to a music festival. It's a massive music festival and we were working out the logistics about bringing a mobility scooter. By the end of it, it devolved into all the hurt and pain we've both endured over the last 5 years with these pain medications. 

For five years she's run out of her pills early which means 7-10 days in withdrawal. I call it "hell week". She shuts down, is really mean, and sometimes gets crazy. I tried to put my foot down and took her pills from her and said I'm managing these from now on. She attacked me, dragged herself from the back of my shirt and called the police. She told them the truth about what happened, that I took her pills and she attacked me. They took me to jail for domestic violence because I "instigated it" by "taking her pills". The DA never charged me though but I did spend a night in jail. 

The month after that, she ran out early again but only by a couple of days. Last month, she made it all the way through with her normal dose. However, obviously, this left me with a lot of resentment and fear because I was hauled away in handcuffs. 

I don't know if I'm enabling her or protecting her but I kept my mouth shut. I had a "get out of jail free" card by telling the truth that she's been overusing her medication for 5 years straight and it's taken it's toll on our relationship. Still, I didn't want to jeopardize her pain management because I've had two friends commit suicide from untreated chronic pain and one who turned to heroin and overdosed. Affecting her pain management would be writing her death certificate.

I know you're probably thinking "well, think about what she goes through". I do, and I am very sympathetic and understanding. However, I really get triggered when she tells me that I need to me more compassionate about her pain after everything I've endured. Like I said, I ask her for 4 hours per week to work on our businesses and ask her to go out every 90 days or so. That's about the bare minimum that I can do. I don't have anymore room to ask for less in a relationship. 

Sex... forget about it. Maybe a handjob every month or so. A meal? I might get a tuna casserole made every couple of months, and that's only when she wants it. I do most of the cooking but we order in about 95% of our meals. Emotional support, connection? Well, I was talking to my cousin who just almost died of covid about my friend who died the day before from covid and she was in my ear about how we need to go to the store for toilet paper. We have extra in the garage and also upstairs in the bathroom but "it's not the right kind". It's like, jesus f-ing christ, can't I talk to my cousin for an hour or so and console her? And also grieve a little bit about the loss of one of my friends?

Here is what I'm most concerned about. I'm suicidal. Not "teenage boy" suicidal but like seriously: "I don't have anything to live for, there is nothing but misery / pain here, I have nothing to lose and everything to gain". I even have life insurance that she'll be taken care of for the rest of her life. 

By all normal standards, we should be happy. We don't have to work, live in an upper middle class neighborhood, two nice cars, no problem with money... but there is nothing but pain. I hear the word "pain" about 50 times a day. I read that hearing the word triggers the same parts of the brain as actual pain. 

It's been a long and tedious journey. Everything I've accomplished in life is like doing so with a 500 pounds backpack on. I could have done so much more if I didn't have all of this weight. I did love her at one point but after dealing with the withdrawal symptoms for so long and then actually being put in jail, it made me realize how powerless I am to control my own reality. Sure, I could take full control, tell her doctors that she's been misusing her medications, etc. but that wouldn't do anything good. 

I could get up and walk out the door but where would I go? A one bedroom apartment costs about half as what we're paying for our 5 bedroom house with a pool/spa. We could split up, get two apartments and be done with it. But then I'm back to square one. And we'd have to shut down our businesses and start from scratch. 

I guess that's what needs to be done. It's become a matter of life or death and definitely a matter of sanity and freedom. 

I'm not well and I'm in no position to take care of anyone right now so I'm doing a disservice to both of us. She told me this evening "if you weren't here, I would be doing X Y and Z with the medication dose I'm on now and I'd have a great relationship with someone else". I said "great! Let's go out separate ways. The least you can do is be nice to me in the process and maybe even grateful that I carried all of the weight to get you to this point to where you can be happy with someone else. I injured myself pretty badly emotionally and mentally by doing so. Is it so hard to just say thank you and move on peacefully?"

She doesn't want to leave and she doesn't want me to leave either. I don't want to leave. I just want my wife back. But the scars are so deep, I don't know how to deal with them internally. What am I going to do? Go to counseling? To do what? To help me accept all of this but still remain in the same situation? 

The woman I love is gone. The man I was is gone. What's the point?

Thanks for letting me vent.


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## In Absentia

I understand your mental state, but if I had a pain as bad as cancer, I'm not sure I would like to go out, cook or have sex. It can't be easy looking after your wife, but I'm not sure you understand the seriousness of her condition. If you can't cope, I would recommend seeing a therapist, or organise help so you can have a break. Not an easy situation. I feel for you.


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## Andy1001

You have my sympathy buddy. 
I wish I could offer you a solution but I think anything I suggest you would have thought about already. Good luck.


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## D0nnivain

Try finding an EDS support group. A friend of mine has the condition. His doctor hooked him up .


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## TJW

enoonami said:


> I just want my wife back.


Sorry to have to tell you......she's not coming....



enoonami said:


> Is it so hard to just say thank you and move on peacefully?"


Yes. Because, deep inside, she knows that her statement is utter malarkey. Nobody, but nobody, is going to take her and be her "supply chain".



enoonami said:


> Go to counseling? To do what? To help me accept all of this but still remain in the same situation?


BTDT. Don't waste your time or your money. That's the only thing you will be offered by it. And, I want to tell you, as harsh as it may sound, you will NOT get loose from this person in divorce. The court system will do what I came to call "enforced enabling", making you PAY and pay, and pay, and pay.. You are, and I was, in a place where "...it's cheaper to keep her..." is an adage which helps.

I want to tell you what I did. And, what WORKED. And, it was the solution I never thought of......

I want to tell you, I've endured pretty much this same deal. The overdoses, the hospitalizations due to overdoses, the reports that I was "an abuser",....I never went to jail or got arrested, though. She tried to charge me with it but the police dismissed the whole thing and left. I never did anything to hurt her.

One time, I got so crazy with it that I walked into the State Police and asked them to lock me up.



enoonami said:


> could have done so much more if I didn't have all of this weight.


My wife's doctor gave me a paperback book about a guy who continued his life beside his chronically-ill wife. When I first read it, I got so angry I threw it against a wall. I said to myself, "....oh, ain't that wonderful...."...."....some guy who's got a billion dollars had time to write a book.....

I sure know that sentiment of yours. I was livid inside. My career that I loved got obliterated.....I was traveling, playing dates, and making a living between that and my part-time business. However, in the words "could have done so much more" I found the answer. On the day I signed a contract on the line where it said "Employee", I thought I was going to lose my mind. Everything, everything I worked like a dog to build was now being squandered on the altar of pain-medicine addiction. And, I HATED that doctor. As far as I was concerned, he was RESPONSIBLE for this crap,. I started to ask the questions about how to sue for malpractice.

However, I was going to make money. More money than I ever made. I took on a full-time employee whose job it was to take care of her. 40/5. I started to return to mental normalcy. I was even staying overnight in a motel some of the time, just so I could bloody STAY AWAY from the disordered person I was married to. A couple years down the road, I made enough money that I could outfit my music studio. I started producing tracks and sales product for the groups and soloists around the area. The career I lost (and thought was gone forever) was actually just beginning. It was tough, I had really limited time. But, I was feeling alive.....

And, The dream continued. 16 more years. I loved it. I came home several times to find a trail of feces between her bed and the toilet. But, she was being cared for, fed, clothed, medical needs provided. And, it was not being done at the expense of my whole life. My employee could look forward to 5:00. Without the money, I would have been dead by now, because, unlike in the song...for me then (and you now) it's 5:00 nowhere.....

I remained sane. She died, tragically, of a drug overdose, 12 years ago, now. She never returned to her sanity. I had to recognize that I was NEVER going to change her, I was never going to teach her, and the doctors would just keep on writing.


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## pastasauce79

My husband has a very painful condition. I know there's no cure for him. I know he can be in pain forever. He might go into remission someday. It's very, very, very hard to see someone you love in pain. 

The best thing we've done is to find multiple support groups. 

There's a big network of support for Ehlers-Danlos. There's the website, the Facebook pages, and Reddit subgroups. I've been reading about it because my sister and I have many of the symptoms. My sister has had a few surgeries so far, she's been in pain for a long time.

What type of Ehlers-Danlos does she have?

There's no cure for it. Your wife will probably live in pain for the rest of her life. She needs counseling, and support from others going through the same thing. You also need support as a supporter. Look for a counselor for yourself. 

It's ok if you think you are done dealing with her and the pain. It's only human to break down and be done with it.


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## Diana7

It sounds as if you are pretty well off. Can you pay for a respite carer to give you a break? Maybe a person who comes on a few hours a day or 2 or 3 days a week? That would give you time to do things you enjoy like hobbies, sports etc.


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## SunCMars

Oh, merciful God,

Such, that we TAMMER's are weighed down with mere marital woes, and others endure those mountains of despair, that unremitting painful distress.

There are those who are unlucky and those seemingly cursed.

_Count Ye' all your blessings.


Lilith-_


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## Luckylucky

I don’t like that medication is being kept from her, and I don’t think she is using it up early and then withdrawing. I do not like that you’re controlling this aspect of her life and I’m pleased to hear police are involved.

It’s possible she actually needs MORE pain relief and is in absolute agony!! You don’t get to decide - no spouse gets to decide how a person with a debilitating illness manages that illness. The best person for this is her doctor. 

Chronic pain (and her condition is very painful) is horrific to live with and nobody should be having their medication rationed. That’s where she can speak for herself, I’m actually recommending that you have nothing to do with her visits to the doctor anymore, and focus solely on your escalating panic attacks. How would you like her to keep your medication from you?

I also noted, you say your social life has dwindled. But your wife enthusiastically said this: ‘You want to go out and eat? I don’t feel like using my cane’. You see that?? 

She was feeling good, trying, and wanting to be with you, didn’t need her cane… and asked you to go grab a bite! And you shot it down instead of celebrating it. That’s on you, that thing where you got angry and raged at her because she mentioned her cane… it appears to me she was delighted she didn’t need it and wanted to share it with you. And you got mad.


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## Luckylucky

TJW said:


> Sorry to have to tell you......she's not coming....
> 
> 
> 
> Yes. Because, deep inside, she knows that her statement is utter malarkey. Nobody, but nobody, is going to take her and be her "supply chain".
> 
> 
> 
> BTDT. Don't waste your time or your money. That's the only thing you will be offered by it. And, I want to tell you, as harsh as it may sound, you will NOT get loose from this person in divorce. The court system will do what I came to call "enforced enabling", making you PAY and pay, and pay, and pay.. You are, and I was, in a place where "...it's cheaper to keep her..." is an adage which helps.
> 
> I want to tell you what I did. And, what WORKED. And, it was the solution I never thought of......
> 
> I want to tell you, I've endured pretty much this same deal. The overdoses, the hospitalizations due to overdoses, the reports that I was "an abuser",....I never went to jail or got arrested, though. She tried to charge me with it but the police dismissed the whole thing and left. I never did anything to hurt her.
> 
> One time, I got so crazy with it that I walked into the State Police and asked them to lock me up.
> 
> 
> 
> My wife's doctor gave me a paperback book about a guy who continued his life beside his chronically-ill wife. When I first read it, I got so angry I threw it against a wall. I said to myself, "....oh, ain't that wonderful...."...."....some guy who's got a billion dollars had time to write a book.....
> 
> I sure know that sentiment of yours. I was livid inside. My career that I loved got obliterated.....I was traveling, playing dates, and making a living between that and my part-time business. However, in the words "could have done so much more" I found the answer. On the day I signed a contract on the line where it said "Employee", I thought I was going to lose my mind. Everything, everything I worked like a dog to build was now being squandered on the altar of pain-medicine addiction. And, I HATED that doctor. As far as I was concerned, he was RESPONSIBLE for this crap,. I started to ask the questions about how to sue for malpractice.
> 
> However, I was going to make money. More money than I ever made. I took on a full-time employee whose job it was to take care of her. 40/5. I started to return to mental normalcy. I was even staying overnight in a motel some of the time, just so I could bloody STAY AWAY from the disordered person I was married to. A couple years down the road, I made enough money that I could outfit my music studio. I started producing tracks and sales product for the groups and soloists around the area. The career I lost (and thought was gone forever) was actually just beginning. It was tough, I had really limited time. But, I was feeling alive.....
> 
> And, The dream continued. 16 more years. I loved it. I came home several times to find a trail of feces between her bed and the toilet. But, she was being cared for, fed, clothed, medical needs provided. And, it was not being done at the expense of my whole life. My employee could look forward to 5:00. Without the money, I would have been dead by now, because, unlike in the song...for me then (and you now) it's 5:00 nowhere.....
> 
> I remained sane. She died, tragically, of a drug overdose, 12 years ago, now. She never returned to her sanity. I had to recognize that I was NEVER going to change her, I was never going to teach her, and the doctors would just keep on writing.


I don’t know her illness, but the doctor giving you a book and you throwing it at a wall is very telling. You refused to read it because you don’t like being told what to do. The ‘I don’t need help I don’t have a problem’ guy. 

But you fiercely enforced that your sick wife had to do it your way.


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## frusdil

Luckylucky said:


> It’s possible she actually needs MORE pain relief and is in absolute agony!! You don’t get to decide - no spouse gets to decide how a person with a debilitating illness manages that illness. The best person for this is her doctor.
> 
> Chronic pain (and her condition is very painful) is horrific to live with and nobody should be having their medication rationed. That’s where she can speak for herself, I’m actually recommending that you have nothing to do with her visits to the doctor anymore, and focus solely on your escalating panic attacks. How would you like her to keep your medication from you?


I can see both sides of this. He has to deal with her and the withdrawal for almost 2 weeks in one instance. None of this is easy - for either of them.

OP, are you being treated for your obvious depression? Please ensure you take care of yourself first, so often all the focus is on the patient and the carer gets forgotten. I also hope you look into organising some desperately needed respite for yourself, a few days a week - whether your wife likes it or not, because you need it. She also needs another outlet for her pain and distress.


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## TJW

Luckylucky said:


> But you fiercely enforced that your sick wife had to do it your way.


No, that's where you're wrong. I "enforced" nothing.... on the day she died, the coroner walked into our bedroom, saw the foam around her mouth, and looked at the table beside her bed, and said "...I see the problem....". Perhaps I should have "enforced"......



Luckylucky said:


> no spouse gets to decide how a person with a debilitating illness manages that illness. The best person for this is her doctor.


I agree with you, that it was not up to me to decide how she managed her illness. In like fashion, it's not "up to me" to sacrifice my life in order to care for her. She makes her own choices. She chose a bed and a stupor. What I did was to see to it that she had sufficient means, transportation, insurance, etc., to manage her illness the way she thoroughly enjoyed.

However, her doctor was not the "best". He was sending her prescriptions for narcotics through the mail without requiring her to come to an office visit. I think this has since been outlawed, as it well should be.

Three other doctors told her to go find another doctor, that they were not writing for it anymore. They, in my mind, deserved their license to practice medicine. They were compassionate, but clearly understood her addiction and compulsion. They all recommended professional treatment for her, but would not continue her on the dead-end-road (no pun intended) she was on.


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## CountryMike

Luckylucky said:


> I don’t like that medication is being kept from her, and I don’t think she is using it up early and then withdrawing. I do not like that you’re controlling this aspect of her life and I’m pleased to hear police are involved.
> 
> It’s possible she actually needs MORE pain relief and is in absolute agony!! You don’t get to decide - no spouse gets to decide how a person with a debilitating illness manages that illness. The best person for this is her doctor.
> 
> Chronic pain (and her condition is very painful) is horrific to live with and nobody should be having their medication rationed. That’s where she can speak for herself, I’m actually recommending that you have nothing to do with her visits to the doctor anymore, and focus solely on your escalating panic attacks. How would you like her to keep your medication from you?
> 
> I also noted, you say your social life has dwindled. But your wife enthusiastically said this: ‘You want to go out and eat? I don’t feel like using my cane’. You see that??
> 
> She was feeling good, trying, and wanting to be with you, didn’t need her cane… and asked you to go grab a bite! And you shot it down instead of celebrating it. That’s on you, that thing where you got angry and raged at her because she mentioned her cane… it appears to me she was delighted she didn’t need it and wanted to share it with you. And you got mad.


One error for sure, you can bet your bottom dollar she does take some extra pills during the month and runs out a few days early. And if you've never experienced or observed it first hand you have NO idea what that week's like for her and the spouse who watches, lives with.

There is no doubt on that particular topic whatsoever. 

Hang in there OP. Perhaps a medical prescription for cannabis to smoke can help, or edibles.


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## LisaDiane

frusdil said:


> I can see both sides of this. He has to deal with her and the withdrawal for almost 2 weeks in one instance. None of this is easy - for either of them.
> 
> OP, are you being treated for your obvious depression? Please ensure you take care of yourself first, so often all the focus is on the patient and the carer gets forgotten. I also hope you look into organising some desperately needed respite for yourself, a few days a week - whether your wife likes it or not, because you need it. She also needs another outlet for her pain and distress.


And if she is running out of her pills that early, then she IS taking more than what she is prescribed. And if he tells her doctor that, SHE WILL LOSE THEM all together. He isn't keeping them from her, he is trying to keep her taking them AS PRESCRIBED by her doctor.

If she needs more, the responsible thing to do is to tell her doctor so HE can decide if she needs more. It's not for her to take extra - which sounds like she is taking double, if she is running out halfway through the month.


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## Bobby5000

At a minimum, start scoping out your own time, 10-15 hours doing when you want on your own. Consider an aide or family member to be there if needed. So the first step is trying to make the current situation livable.


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