Marriage & Disability – How Can It Work?


 

wedding rings

 

“In Sickness and In Health” The one marriage vow I thought would come after 20 years of marriage, not 4.

 

Media has distorted our perception of love and marriage. It is impossible to have candlelight and rose petals every Saturday night. These are standards that NO ONE can live up to.We see the Twilight series and think, love should remain sexual, intense and volatile. That is infatuation or lust, not love. Love is deeper, stronger and calmer. It transcends the physical. It is knowing you would give your life for theirs. It is looking up at each other and knowing exactly what they need, before they even say it.

 

Love is work,  maintenance, understanding, compassion, empathy, solid, monotonous, enduring, hard. Most importantly love is unconditional.

 

This Blog entry is about my view of marriage/love and disability. When I say marriage, it for you to interpret in whatever way you want. Relationships come in many different forms, so using this term was easiest for me.

 

My Story

 

When I was 25, my friend threw a party for me.  I was sitting on a blanket playing with my friend’s son, I looked up and realized that he was the “one”. If you knew the backdrop of the story, you would have found this funny. A Melrose Place moment, as it were.

 

Anyway, we got married after 2 years dating, 2 years living together and had our first child after a year of marriage. He comes from a very functional family, which made it difficult for us to communicate effectively. I figured; if we weren’t dealing with broken dishes, drunken fights and abusive language,  we were ok. His family doesn’t really argue, so there was no example for him to go by.

 

I had to learn how to communicate in an effective manner, to build an argument like a debate, rather than a brawl. When we had our first daughter, I knew I wanted to stay home with her. We agreed I start my own business from home. This was difficult as it was a significant loss of income and a significant increase of pressure on him. As usual, he was supportive and encouraging.

 

When we had our second child and the pain started, I wasn’t able to do all the things I wanted. He was skeptical about the severity, intensity and longevity of the pain. He was getting frustrated with the Doctors and the inability to “fix” what was wrong with me. We started to pull apart. I couldn’t talk to him without him reacting. I started to pull inwards more and more. I became depressed and sad. I was an immediate failure at what I wanted so much, to be a good wife and mother. Words cannot ever express the damage to my self-esteem, it was a daily struggle to keep my head up.

 

At the 2 year mark of the disability,  it was clear: either get counselling or divorce. We got counselling. It worked. He was able to hear me when I was talking, not listening, but actually hear me. I finally told him, I needed him. This was terrifying for me. It was like swan diving off a cliff and so very, very afraid that I would not be caught, but I was.

 

Even though he has suffered and still does because of me, he has gained some good things too. He has a very involved relationship with his daughters. He knows what their favourite foods and colours are, what their teachers names are, who their friends are. They love being around him and know they are valued. Not to say that he wouldn’t have been a great Dad if I hadn’t been disabled, but it certainly sped up the process.

 

I feel tremendous guilt regularly about what he has had to put up with. I was an active woman. I loved to travel, go dancing, have people over, do things. I was never the person who wanted to lie by the pool and tan. I would have gone to every event or tried something crazy. In the past few years, we have been limited in what travel I can do, where I can go or for how long.

 

I try to make sure he has enough things to occupy him outside of me. I encourage him to go out with his friends, go on trips, to maintain a relatively normal life. I try not to ask too much of him. Slowly, I have been able to gain more independence and the load has lessened.

 

What Is Marriage And Love?

 

A few years ago, a family member was talking about marriage and how to keep it together. She mentioned that it was “date nights” and “quality couple time”. Another family member responded by saying; “Actually, it is marriage counselling and getting through the s**t” She was right.

 

Two examples of Hollywood marriages that have suffered a physical or mental trauma but have survived are the Reeves and the Reagan’s. Christopher Reeves could not even move his arms and his wife was by his side until he died. Ronald Reagan suffered mental trauma but his wife Nancy stayed with him and cared for him. In so many other cultures around the world, they don’t even consider “date nights”, “snuggle time” or “love notes” as part of their marriage/partnership. For them, it is about survival and commitment. It is the realization that to be blessed with a good spouse and children is enough.

 

My girlfriend suffered a back injury while in the first year of her marriage. She lived in a very rural spot which exacerbated her isolation. Her new husband was less than understanding about her situation. She beat herself up, loading up on self blame. She asked me what was going on and why was he being like this? I asked her “if you had a double mastectomy tomorrow, would he still find you beautiful” She knew the answer.

 

If nothing else, I have learned this from my disability: My Husband is My Home. It doesn’t matter where we are, what we are doing or where we are going, if we do it together, it is going to be ok. We fight and I piss him off with dismal regularity. He probably wants to walk out the door at least every month (or day, you should probably ask him). He certainly didn’t sign up for a disabled wife, whose body is scarred, burned and broken. I feel constant guilt about my appearance, but it is of my making. He has never, ever intentionally made me feel self conscious about my appearance.

 

He has taught me about love, because he is still here. I know a man like him, actually a person like him is very, very rare. I don’t need to look around for something else, because what else could I want? I am so truly blessed. If I had to go through this Chronic Pain to truly understand real love, then every day was worth it.

 

Some Coping Strategies

 

I hope this article is able to let other pain patients know it isn’t ok to have abusive comments thrown at you. It isn’t ok, to be left alone all the time. It isn’t ok to be threatened with abandonment. It isn’t ok to be ignored. You should still be treated with respect. If you don’t feel you are, then I suggest counselling. It certainly helped us. Remember to let your partner go out on their own. Let them have freedom from you. Don’t be passive aggressive with your condition. Don’t try to hide your feelings, let them out constructively. Be patient and forgiving, if they start to get angry. Let them get their issues out on the table and don’t interrupt them. Validate their feelings. Try to really hear what they are saying. If you need help, ask for it. Don’t be a martyr, that will only make things worse. If  you think there is something you need, like more child care or a cleaning lady, discuss it with your partner and work it out. Pushing yourself too hard will cause you increased pain, longer recovery time and resentment. So, get help if you need it. If you feel that a certain day is a big pain day, then say “Today, I am in a lot of pain so I may be cranky and short tempered, so please be patient with me.” This helps them to understand that it isn’t them you are mad at, it is the pain.

 

For those who are married to people like me, it is ok to be angry. It is ok to be sad. It is ok to feel cheated. It is ok to feel loss. Those are all valid emotions. It is important to recognize the difference between manipulation and genuine need. It is essential you know, many of the comments or intonations that come out of a pain patients mouth, may be distorted by the physical pain. Lack of desire, is not about you. It has to do with the patient. Many times, we can’t help the physical reactions as we are just exhausted with fighting pain. Understand we feel so very vulnerable and scared all the time and it probably has nothing to do with what you have said or done, but just an inner feeling. Sometimes we may respond to something in what seems like an irrational way. For example, my husband had his bare feet on the carpet and it felt like fingernails on a chalkboard. It set my whole system on fire. I don’t know why, and I know it seems irrational but I had to explain what was happening and he understood. Thought it was wierd but understood. If they tell you that it is a pain day and to be patient, be patient. Don’t take it personally. This time it really is the “It’s not you, it’s me speech.”

 

I hope these comments are helpful. Marriage/Partnership is a very hard thing to be successful at, regardless of pain. It takes commitment, dedication, work, empathy, compromise, patience and humour. The unrealistic expectations set by our culture, in regards to love are impossible to reach. Add in a dash of disability and you have a recipe for disaster. I guess, my advice is this, take a good long look at yourself. Be honest about what you have said/done in your situation. Think about how you would feel to be on the receiving end. Then talk about what your concerns are. If you feel you are not able to effectively communicate your emotions or thoughts, get counselling. Work on yourself, work on your marriage, have patience and understanding.

 

Love is truly a difficult thing to find and even more difficult to hold on to. It is not what Hollywood portrays……but if it is real…..it is much,much better.

 

“I may not be a smart man Jenny, but I know what love is” Forrest Gump

 

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17 thoughts on “Marriage & Disability – How Can It Work?

  1. Sounds like I was in a similar situation to your husband. After years of trying to work through the chronic pain (CP) our marriage was lost. I still support him in getting better but our marriage couldnt make it. Some days i still want to cry and wonder if it weren’t for the pain would we have made it? CP ended up consuming every aspect of our lives. I won’t pretend to know what it’s like to be in CP but i think i understand alot about living with a CP patient. I wish you all the best in recovery-marriage-kids etc..from the ex-wife of a CP patient i can give below advice toyou:
    -don’t take anger out on him, you can ask him to be patient and tell him it’s not him its tyhe pain but years of anger take ther toll.
    -obviously your husband hears your frustrationsand anger, make sure you hear his, really hear his, have patience with him like he has patience with you, if he won’t talk to you he’ll talk to someone else
    -one round of counselluing may not be enough, keep going back, even if you think you are better go back again, it can’t hurt.
    -remember talk talk talk, if your social life together is suffering talk about and make a plan that you both like. If your sex life is suffering talk about it and make sure you are both satisfied (this is a biggy). If either of you is boiling over in frustration talk about it, do not hold it in, do your best to talk calmly and rationally about things
    Best of luck and happy blogging

    1. Some very important points made by some readers. There are very few resources for spouses of CPI. Once communications and sex cease in a marriage it is in trouble. The pain becomes so consuming that spouse is left isolated and lonely and often turns somewhere else for their needs. Be sure to set the expecations on communications and sex for the CPI spouse. – Listen and do not judge your spouses frustrations otherwise they will become withdrawn and irritable, this is not their fault. – What is your expectation of your spouse if you are not having any type of sexual contact. It’s not fair to expect sexual contact to end. Humans desire intimacy and having it cut off is not fair. If you want your marriage to work address this. Without addressing this you are telling your spouse your marriage is not worth it and their feelings don’t matter, the only thing that matters is your pain. The CPI spouse will have their ego and self esteem in tatters and will look outside the marriage for commincations and sex. Do not avoid this conversation. Despite all your pain your marriage is a partnership and must be treated as such. Keep up the good work.

  2. I enjoyed readin g your story and wish you and your family the best.
    I have spent years working with spouses of CPP’s, all CP cases are difficult at best to diagnos and even harder to help. Spouses of CPP’s are barely on the radar and often get little or no support. You are certainly in the minority in keeping your marriage together so far. oVer the years my research indicates there are 3 main factors in keeping a marriage together. 1 -Do not grom complacent. It’s very easy for a CPP to slip into a life of laying in bed, watching TV and playing video games with a non existant social life. IF you are unable to go out for dinner or go on a date does that mean your spouse must suffer that same fate? Encourage outside interests for your spouse. To guilt a spouse into being around 24/7 will not help the marriage. Will only casue co-dependency. 2- Communication – Allow yout spouse to voice frustrations and concerns to you. At some point the frustrastion and feelings of hopelessness will come out and you need to just listen. Do not judge. The frustration is at the pain and not you. Evert spouse of a CPP needs to vent. Often times it is human nature to avoid a potentially akward situation so making it easy for your spouse to comminicate is key. If your spouse is not communicating with you they will be pouring their heart out to someone else. Particularily for men, this is easier to do to a femail. OFten this leads to intimate bond with an outside party. Let your spouse talk to you. 3 – Intimacy. The average North American marriage has sexual encounters about twice a week. GOing from this to zero is not natural. It is not realistic to expect sex to simply stop. Humans are sexual beings and desire intamacy. This can be a vert difficult situation but must be addressed. Find a comfort level with the types of sexual contact you have and the frequency. Avoid not having intimacy in your marriage, it will kill it.

    Good luck and keep fighting

  3. Hang in there, interesting article. I learned the hard way, I can’t imagine how your situation complicates a marriage. This is what I learned about relationships-

    1) Most women have idea how hurtful their words are to those around them, especially to men, particularly husbands. Belittling, passive aggressive statements telling him what to do, when to do it and how to do it may not at the time appear to hurt but over stretches of time will beat him down, he will tune you out. Are you complaining that he doesn’t help out in the kitchen? And when he does you complain about how he doesn’t cut the tomatoes the way you do or it’s just easier if I do it. Instead practice gratitude and the time you get to spend together. Go out of your way to pass a compliment, make sure it’s a compliment that the male ego will appreciate.
    2) Nothing castrates a man’s self-esteem more than a woman who uses sex as a weapon to “teach him”, “get back at him” or to simply withhold. This includes the occasional headache or faking your orgasm. Most mothers wouldn’t send their child to bed without food for something they got in trouble for, because it’s plain inhumane. What do you want more: to be right at all cost or a happy marriage? If you want to be right then by all means manipulate your man with sex. If not, then try to loose yourself in utter trust into your man from time to time and watch a miracle take place. He will get tired of asking (begging) after his ego has been trampled and you can bet he’ll get it elsewhere.
    3) 1 & 2 come together. Appreciation and respect is a man’s fuel to do even more for you than he already is. Tell him daily that you appreciate him and give him examples with what exactly you appreciate about him. Then show him with actions how grateful you truly are for his existence in your life. Gratitude and sex for a male make a co-operative, loving marriage.
    Relax and trust that you’re doing your best and watch him go above and beyond for you. A little grease on the wheels will pay you both back in the end more than you can imagine.

    1. Hi Pur Kitten,
      Thank you for your comments. A few things you mentioned I totally agree with and some points I wanted to expand upon.

      1. Manners – since my husband and I have known each other, we have always had a “Please & Thank You” marriage. Meaning, we have always thanked each other for things, like dinner, doing laundry, passing the remote etc.
      It may seem like a strange thing, but it does really go a long way, disability or no…I encourage all people to do that with everyone. We seem to have lost that as a society in general.

      2. Support – it is important to encourage and support your spouse. For example, I wanted to stay at home w/ the kids and he supported that, willingly. My husband wanted to start working out more, so I found him a personal trainer. There are many more examples of that, but I agree, you have to support people, the way you would want to be. If he is happy I am happy. It doesn’t matter where we are, as long as we are together.

      3. Letting go – I learned early on that my husband wouldn’t fold the laundry the way I would. And seriously, is that going to kill us if he doesn’t??? Not really, so he has his method and I have mine. We try to laugh about it. Funnily enough it is those things you would miss if they were gone. Not for real comparison, but when our dog died, I actually missed cleaning the massive amounts of hair. It felt empty.

      4. Communication – talking about things is the best thing to do. Make sure that you use language and a tone of voice that you would want….

      The comments I have received about sex have been very interesting. It is my opinion that if someone is using it as a weapon, that is unhealthy for any marriage. Or even for someone’s own mental health and a point where you should seek counselling immediately.

      Intimacy, is what is important. That is the crucial factor in a marriage and that can come in many forms.

      If you just “do it” because you feel that is the only way to engage with and/or keep your spouse, it has no value…for either partner. Physical relations – disability or no – should be wanted and cherished between spouses, not something on a laundry list of things to do. If it is done because it is a “tick” off the daily list, it is more likely to make someone wander.

      The pain has been a long journey that has taught me so much about myself, my husband and my family. I am so grateful to everyone who has given feedback and ideas and strategies.

      I absolutely agree that being a team is key and to remember that you treat people the way you want to be treated.

  4. A great article from Dr. Heller @ http://www.drheller.com. Women drive communicAtions and sex within the maariage. May not be fair but nature made it that way for a reason. Your situation sounds difficult and you sound like a very strong person. Kudos to you, your husband and kids. Very interesting input from other readers, certainly a recurring theme. Remember to put your marriage first, a happy husband and happy marriage make for happy children. Don’t lose sight of the support you are getting and make sure to show appriciation. Read above link and remeber you are the primary communicator and primary initiator (sexual or otherwise) within the marriage. With the right mix of communications and intimacy men will be very loyal and loving…there is a big difference between a passionate marriage and existing together for the kids as roommates. Whether they know it or not males crave female attentiona nd will seek the path of least resistance. I makes sense that this should come from within the marriage. IF it doesn’t it will come from elsewhere. Communicate and be intimate and own your marriage. GIRL POWER!

  5. Great blog. I am struggling right now with my own marriage. An open letter to my spouse:

    “I have watched you suffer in pain for almost 10 years. My heart truly breaks every day, but I can’t do this anymore. Constant petty arguments, explosions of anger, devastating loneliness and a string of destroyed relationships with family, friends and co-workers.

    I have become accustomed to your mood swings, the dark cloud that hangs over your head and the absolute lack of affection and the half-hearted effort that goes into our marriage. You are noe depressed and refuse to seek help for your mental state. I have stuck by you through thick and thin, when I said “I do” I meant it, but it takes 2 to make a marriage work. It would have been nice to see some effort on your end. This would be a simple as seeking help.

    I have spent years wondering if I am at fault for not pushing you harder to get help but I get guilted into keeping my mouth shut to avoid yet another fight. I can’t talk to you about any of the issues in our marriage , not really sure they even matter to you anymore. I wake up every morning and am there for you to lash out at, I take it every day and keep my mouth shut. I wish I was a stronger person. I have been told by family and friends that I need to put myself first to get through this but without your cooperation this will not happen, the guilt you would put on me would be enormous. I assume some of the blame for your behavior, in the begining I let you walk all over me and tear me apart, bit by bit. You have completely destroyed my self worth.

    For years I kept my feelings bottled in completely but have since learned to share them with certain people. Among these people are our neighbours, my friends, our friends and family. You have no idea and I will never tell you. You are impossible to talk to. These people have been an incredible support network for me.

    Your pain does not give you the right to belittle me.

    Your pain does not give you the right to completely ignore my needs.

    Your pain does not give you the right to guilt me into doing thingsd for you and not doing my own thing.

    Your pain does not give you the right to expect me to stick around and be abused, frozen out,ignored and disrespected by you.

    I have right to emotional hapiness, I have the right to speak my mind, I have the right to physical touch and sexual gratification. I meant “I do” but I am not in love with you anymore. We just live together, not even really friends.”

    I left this too late and wish I had been brave enough to say soemthing earlier. PLEASE, PLEASE check in with your spouse, let them talk, no matter what they say just listen. It will help you through this difficult time.

    1. It’s a very strange feeling to read a letter from a woman to a man and know that I could have written almost exactly the same letter to my husband today.

      My husband didn’t belittle me, he just said “no” to every positive suggestion I could dream of about things that either I could do or things that he might consider.

      But, you know what? Saying something earlier may or may not have helped. I did say something earlier. I said something every step of the way. I have been a persistently asking what I can do with my husband that he would like, when or if he might have some time to spend with me, asking what it is that he needs help with, what he can do that would give him a sense of satisfaction and accomplishment, and telling him that he is worth something – a lot! But unfortunately, pain took all of his attention and he withdrew into depression. There was no prying this turtle out of his shell. He decided to curl up and “wait it out” as though the pain were a passing thunderstorm. But chronic pain is a thunderstorm that doesn’t let up. And there are only so many years someone can wait outside a turtleshell waiting to see if the person hiding inside would like to come out just a little bit to share their life with you.

      If I stay, and my husband doesn’t communicate well with me, I would be playing the “martyr”, and that’s not helpful. He has enough problems already with chronic pain and depression. If I accepted a life with no affection, communication, trust, or any of the other good things we look for in relationships, it would twist me further into a deeply unhappy, frustrated, and angry woman. That’s not the kind of wife I would wish upon any man. I would like it if he chose to start communicating well with me again, but I have to accept that whether or not he does is his choice. And I also have the acknowledge that even if he did start talking openly with me now, I may be so far depleted that I may have nothing left to give.

      I don’t know what is going to happen next. I think there will be very difficult changes coming soon.

  6. Soory if this posted twice – having some technical issues.
    Some great posts, love the sight. A note regarding Jill’s post. Jill you are absolutely correct in voicing your opinion on how you should be treated. Being the spouse of a CPP is very difficult, the feeling of being painted into a corner is understable and quite common. You’re not alone, unfortunately there are very few resourses for supporting CPP spouses. It sounds like 2 way communications are long gone for you and your spouse, driving a wedge between you. This has effected your marriage on every level. It’s not fair but you need to decide if this can be changed or improved while assuming your spouse’s situation will not improve.

    Is this realistic?

    Has there been an expectaion set regarding intimacy? Have you expressed your frustrations regarding this? If it’s to the point that you no longer desire to be inimate with your spouse you need to discuss this with a marriage counsellor.

    It can get to the point where your self-esteem and confidence has been crushed. You sound like a strong person, stand up for yourself, your needs and wants. This does not make you a selfish person. Your spouse’s actions sound petty and selfish. It is absurd that you are expected to remain in a sexless, demeaning relationship,you do not deserve that. Chronic pain is a horrible thing but does not give your spouse the right to treat you like garbage, discount your needs and think the world revolves around their pain.

  7. PurKitten, very good insight. I have learned some hard lessons as well. I hope someone can learn from what I went through. My husband & I had been married 3 years when I was diagnosed with what Doctors thought was FM (still not sure). 4 years of pain and agony. My husband was a trooper and did the best he could to cope through my fits of rage, days at a time in bed, 100’s of doctor’s appointments. He picked up the slack, paid the bills, did all the cooking, cleaning etc..with out a word of complaint. The pain peaked in year 2 and very slowly got better. During this period I was blind to everything but the pain.

    My husbands patience ran out and our marriage ended after 7 years. We remain friends to this day but can’t go back. Looking back it’s easy to see why it failed, little communication, no intimacy and complete isolation for both of us. Most couples aren’t equiped to deal with this.

    “just doing it” is a mind set that’s very dangerous, hopefully you can remember the reasons you married your spouse and communications and intimacy will jog tthose memories. A successful marriage require both…you can make all the excuses you want to put both on the backburner but your relationship will fail. I oftern ask myself “would it have killed me to drop a compliment a little more oftern, to grab my husband and give him a big hug and say thank you.” To be physically intimate in some form withg my husband after years of celibacy would have releaved alot of stress in our marriage. Be sure to take the pain blinders off when you can and think of your spouses needs, all of them. Being a roommate is different than being married. Communicating with respect means communicating openly and honestly and not hurtfully (mental intimacy. Your sex life is just as important (physical intimacy) and does not require daily intercourse, just fool around. I guarentee he will appriciate it.

  8. Maryp and Purkitten, thanks for the stories. It’s not an easy situation. Sex is not a commodity ruled by either sex. Falling into this pattern leads to a cycle of the excluded partner feeling frustrated, worthless and rejected, ultimately leading to avoidance for both. Infrequency of sesx will lead to mutual dissatifaction and manifest its self in other areas of your marriage. An intimate encounter can be worth a thousand conversations, a constantly rejected partner can end up with very low self esteem. Whatever your pain situation is make an effort for intimacy, it’s worth it. Set aside time for this, it might seem contrived but it gives you time to reconnect.

    If you need help, go for counselling, a therapist trained in sexual health will provide great support. The important thing is don’t let this issue pass by as MaryP learned. If neither partner cares anymore it’s a sure sign things maybe beyond repair.

  9. Interesting, although one-sided article. Some of the comments are great as they are from a partners perspective. Intimacy has to paly a big role in any marriage, It makes you feel wanted and desired. RWhen your spouse loses desire it can be extremely damaging to the partner. Most men will stuff their ego in a sack and try to forget about it. No going out or occupying him will help. The constant rejection will tear him apart and he will eventually lose interest in you. This is 1,000’s of years of evolution at work. It’s a tough position to be in for both of you. You’re husband sounds like a good guy, great dad (all the more to worry). Do you discuss intamcy, what are his toughts on this. Actions go furhter than discussions. Remember there are 2 perspectives in every marriage.

    1. Well, the article is one sided because I can only speak for my side. I have to say, that this comment is the first to really make me angry. If you would like to offer some constructive advice for the spouses of a Painie, please offer it. If you would like to offer some concrete advice to a Painie, please do so. The purpose of this article and the comments – is to provide constructive, helpful and meaningful advice; that will assist in improving our quality of life. Both the Painie and their Spouse

      Comments like yours, help ensure shame and silence. Being made to feel like we are purposely hurting our spouses or that we are at the risk of losing them at any moment is not helpful, supportive or true. I have friends who are perfectly healthy, were having sex 2-5 times a week and their marriages busted up because one spouse felt rejected. Whose fault is that? Is it the cheater because they cheated or is it the other one because they didn’t give enough? Where are you drawing this line for us?

      My point for this article and for expressing my views on marriage and disability is this; we as a society have unrealistic expectations for marriage. We feel that we have to have roses and date nights and whatever. The fact is that around the world, marriages are based on this. Mutual respect, love, admiration, understanding, acceptance, patience, friendship, trust and understanding. It is work. It is conversations. It is a lot of things. My point is that being allowed to have forums like this to express how we feel is essential. To be constantly barraged with ignorant comments about years of biology, being worried that they will stray, etc. is just quite frankly mean and unnecessary.

      As for your comments about actions..you are right. Those actions can be brought about in many ways. Again, please note that my point is bringing flowers and sex are not the only ways to show actions. Fighting an illness that consumes your body all day, requires a lot of energy. Trying to get better to be with your spouse is an action. Doing what you can on any level to make them feel loved and wanted is an action. But the responsibility cannot be on the Painie alone. They need to know they are loved unconditionally too. Just because we got ill, doesn’t mean that we don’t want too. We carry a larger burden than you could even imagine. We not only carry our illness that drains us, but guilt, shame and sadness; simply because we KNOW what type of a drain we are on everyone around us.

      Hormones play a huge part in the Painies life – meaning that over time testosterone, progesterone and estrogen start to deplete due to its’ resources being constantly used to kill pain and survive. This hormonal aspect is biological and not an issue of lack of love or desire. Many people suffer from sexual dysfunction whether a Painie or not and need to have medical assistance to help it. However, most people are too ashamed or embarrassed to talk about it. Having this diagnosis and OPEN AND HONEST conversations with your spouse is what can be helpful. Hormone therapy is new to the Painie world and is also expensive. So many who don’t have coverage or resources are not able to get a proper diagnosis or treatment. To get 2 months of Testosterone is in the neighbourhood of $300. What do you say to those who simply don’t have the biological resources that are required? What do you say to those who can’t afford to have this fixed? Should they be ready to watch their spouse have sex with someone else right in front of them, because it is their fault?

      I think I am also clear that there are 2 perspectives in a marriage. Very clear. I know that I have been truly blessed with a husband who is better than any person I know or will know. He was like that before I got sick. I also know that working as a TEAM, has allowed us to stay married and happily. If this doesn’t break us up, I don’t think anything will. Having said that, attitudes like the one you have expressed makes me really know how lucky I truly am. I hope that no one ever speaks to you the way you have expressed yourself in this forum. I hope you don’t feel the ignorance, meanness and callousness of your comments. I hope that you are not cheated on, abused or disrespected. I wish that for all people, not just Painies.

      I also hope that you take the time to read other stories on this Blog. Maybe you can gain some insight into what it is like to be us.

  10. “…what it is to be us.”

    I realize I am not unique, especially after reading some of these stories, but I did feel very much alone. Now, not so much.
    I stumbled on to this site today by accident – I thought I had read all the journals and med sites actions & strategies for CP, then tried a new search under coping, not solving, a well, here I am.

    This site was so many stories that read like my life today. I found it to quite an experience to just read these ‘histories’ of good marriages failing, of spouses who can’t help, or choose not to and my own story is inside every one of these.

    I am alone in my life. It started 5 years ago and still no one can tell me what it is, how I can cope or how to make it stop. It just goes on every day. My spouse and I are roommates (as someone else noted…perfect, yet truly sad, descriptions) and have been for 2 years. Her issues revolve around my CP in that she uses my own pain to ignore her responsibility to get well herself (alcohol).

    First it was activities, then our time together then sex then…everything. If I could make the deal, I would keep the pain forever and cure her problems first and foremost, if only to try to return to what we once had. That will not happen.

    Apologies for the quiet rant – I guess I just needed to share something to some who know what this life is like. I will be back.

    Thanks for the opportunity to let it a little out.

    Thom.

    1. Hi Thom,

      Thank you for your very honest story. I am glad that you found my blog and are able to maybe find some additional links/resources to help.

      There is no need to apologize for the rant – that is why I created this blog, so you have a voice. You are not alone and quite frankly, I think that many marriages have the same issues we do – even those that don’t have CP to deal with.

      Addiction is a horrible thing to live with and to watch. I know from personal experience the frustration, anger, sadness, desperation and helplessness you feel. I wish I could help you more in this regard.

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