I was diagnosed with PsA when I was about 24..about two years before I got married. I have been married for about 6 years now and trust me PsA has affected my marriage and sexual life. Now I'm not really sure whether he is here because he really loves me or just being sympathy of me having to live with this disease.
Anyone here with the same problem or have any advice regarding this matter? Sometimes I felt so stressed out..
I think we are sharing the same feeling..hope someone with experiences can help us out...
Ilika! You’ve just condensed marriage into a few paragraphs and I’m sorry, but you made me laugh…bless you I needed that.
Marriage is hard, so is being alone.
PsA can make us feel unworthy of love, often we don’t love ourselves and our disfigured flaky bodies so how can anyone else love us? Right?
I can only say communication is the key for me, my husband and I didn’t communicate, I had abuse issues from my childhood and throughout our marriage. We were married 25 years before we left (my 16 year old son an I). He showed no respect for either of us. That was 3 years ago…I have a boyfriend who knows me and my disease and hasn’t considered a life without me, he says he cannot imagine a life devoid of me. He’s seen my pain, my tears, my disfigurements, my emotional pain, my stress. I’ve been blunt about what the future might hold, when I’m frightened of the things he may have to take on and , as I see it, him rejecting me… I cannot verbalise it so I write it down and let him read it.
But he’s blind to the bad side of it all…all he sees is my laughter, my smile, my kindness, my caring, my cooking!, me as the person I am is what he loves and he doesn’t care about the rest…he cares I hurt and I have PsA but it doesn’t outweigh the way he feels about me.
See the person you are…the real you, PsA doesn’t define you. Don’t let the disease hide you. Write a list today about all the positive things about you (the real you)…That is who you are! If you can’t see it, no one else will!
Reen,
Although Im not married, I am having those same feelings. I am 36, have been with my bf for 3 years and newly diagnosed in October. I often ask him if he loves me and all the what ifs (cant walk one day or wipe my butt, etc.). We talk about the changes in my body, mood, depression especially. I suffer from depression and anxiety. The most effective way for me is to tell him how im feeling. I dont feel your love today or im feeling pretty alone and need a little reassurance. Im not having a good day and my attitude sucks. These are somethings that work for me.
We try to have fun with it just so these feelings won’t stay to long. We went to the store to shop, instead of me using the provided motor car. He pushed me around in a cart used to fit 2 children.
I hope things get better for you. Maybe if you try an antidepressant, it may help your feelings of worthlessness. This disease brings the worst and best out of me.
You're probably well aware that living with pain and chronic illness can cause depression. You may want to just keep that in mind.
I was diagnosed about a year after the birth of my second child, 6 years after my husband and I got married. I know what you're feeling. My husband loves me, but sometimes I feel like this is in his head more than mine. He tends to be overly concerned about me being too tired to be intimate, and this makes things tougher. But we've talked a lot about this. This tends to be true for everyone though, and talking about it can be helpful.
So can faking it. And no, I don't mean faking orgasm. I mean saying yes, or even approaching your husband even though you're tired and not particularly in the mood. You'll likely find that you wind up having a good time, and feeling closer. This will make it easier for both of you. The truth is that this will lead to a more active sex life for you. Yeah, there are some things that might not be possible or might hurt, but you'll be able to figure this all out.
I am divorced & can not say I have similar experience. The only advice I can offer is to ask your husband to also join our group. It will help him better understand what you are going through. He will find others here who joined to help their loved ones. So often I see here where people like your husband feel helpless. It is NOT pity or feeling sorry for you. Give your husband more credit, he did after all marry you knowing you had PsA. Best of luck to you & please let us know how you are doing.
Hi Reen, sure you don't want to hear from an old man but....
Sounds like you married a good man but trust me men aren't built the same as women. We are little more simple. We don't hang around out of Duty or guilt we aren't built that way. Heck we can't even get a cold without calling in reinforcements and letting the world know we are suffering a near death experience. Few men can fake it for long. He's the real deal.
Please don't try to educate him as to what "you are going through" Most men hate that kind of talk. They engage in it in High School having learned listening to some adolescent girl wax on about what she is going through is great way to turn a base hit in into a home run, but as they get older and these things turn into real problems, that change. They do like honest information and a solution. Sharing what you can do and can't do and working out a solution between the two of you can be a lot of fun, you might be surprised at how willing he may be to redivide the chores.
BTW, we aren't simple as many think. We take of things privately and "hurt" just as much, give him some space from time to time.
You brought up sex so..... You may be a bit in luck for the first time in either of your lives the difference in wiring may be to your advantage. Your desire will for the first time be stronger than his...(after all he has from puberty to his early thirties been thinking of sex every 7 seconds, so hes a BIT tired) Tha'ts not to say hes NOT interested.....
If you are self conscious about your body, it transfers to him and he becomes self conscious too. Remember generally the lights are out and he really isn't thinking about you complexion..... BUT men are visual so here is your chance to be creative. Men love lingerie, and there is some to "cover up" most any part of the body you need to, while still making you exciting. As far as the physical there is nothing like creativity there either. Those pillows and wedges many of us use to get a nights sleep have other uses. There are ways to please each other outside of intercourse (even if it involves"toys") if you are really flaring. Any of us who have been married any length of tim and have PsA could probably write a PsA version Kama Sutra. But even men just like being together with their girl. But what men really like is surprise and their partner to take the lead. Try bringing him a beer while he is watching the game some Sunday afternoon wearing nothing but an apron. You'll see what I'm talking about. Either the DVR goes on or he won't notice...... A little secret. while men may go window shopping from time to time, YOU look to him just like the girl he fell in love with years ago.
Also every one of us should be on an antidepressant and one of the TCA's (amitriptyline) not the new fangled specific ones (SSRI's). PsA depletes our natural serotonin and fails to inhibit our norepinephrineine. It can cause depression of course but it also makes it more difficult to manage pain. Most pain management specials are Rx ing now although a lot of Rheumy and PCP's may understand the need for an antidepressent are prescribing the wrong ones for the wrong reasons. Oh and if you take amitriptyline at night you will sleep like a baby
Marriage is a partnership. There is a perfect somebody for everybody. Sadly it takes a try or so for some but that person is out there. I am so thankful I knew who mine was in the 7th grade. It took us 6 years to have our first date and another 4 to get married and i'd love to say there has been smooth waters the last 40, but that would be an absolute lie. I guess I'd say spend some time on a Sunday afternoon at a local nursing home and watch some real love in action under circumstances that makes our like stubbing a toe in the dark
Hi Reen,
Your worries are normal. I've been with the same guy for 20 yrs. We met in college, and I had PsA before we met (I was dx at age 10). With marriage AND this disease, there are ups and down. I've had downs where my spouse has to lift me off the floor because I couldn't get up, or put my socks on, and downs where I feel much better but like Ilika I want to beat him with a pot because he is doing something stupid. There are ups where I feel terrible but we lay in bed snuggling and talk about everything, laughing or sharing worries, ups where I feel good and we take a trip or go out together.
We also have 2 children, one on the autistic spectrum. Children make things complicated and hard, and I guess our focus has been mostly on them for the past 10 yrs, with all the normal fights and worries and excitement of childraising. We haven't had time to focus too much on my disease. It just is a part of our lives and we roll with it, along with everything else.
Like tntlamb said, we've probably all written in our minds the Kama Sutra for PsA sex. A lot of times, because we are busy with kids, if we have time we just take advantage of it, whether we initially feel like it or not. If you wait for the urge to hit you may have to wait a long time. Sex can make you feel better, so take advantage, whether by yourself or with your husband. The former can make you want more of the latter. You may need to buy toys to help, if your hands hurt, or plan pain medication or a bath before sex. Don't focus too much on orgasms for either of you, focus on enjoying each other. It will make both of you happier, no matter how you do it. Clearly communicate what is working and what's not. I will tell my husband we need to shift around in the bed the second I'm hurting in one position, and we'll grab various pillows or just let me stretch out for a minute, then resume. Even if we are just kissing and suddenly my shoulder gives out from laying in one position, it's time to move, stretch, and prop things up. Don't forget that snuggling while watching TV or kissing in the kitchen is also intimate and a relationship builder. If your husband hesitates because he is afraid of hurting you, simply say this: "I hurt all the time anyway, and I want to be with you. This will make me feel better".
I've found that it's important not to focus too much on the disease when talking with your spouse. Otherwise it becomes a third wheel in the relationship. You have so much else going for you, even if in the midst of depression you don't feel like it. Talk about other things. If you are home while he is at work, find something to do that is interesting to talk about when he gets home. Talk about books, or a hobby, or someone you talked to on the phone, or even that you got the mail. I'm not saying to not talk about your fears, but don't do it all the time.
Hang in there and ask more questions. There is a lot of wisdom here, and it's cheaper than counseling :)
Hugs all around!
As of January 13, 2013, I will have been married for 17 years. My husband has loved me as a very active size 8 who loved to hike and was very physically active and he's continued to love me as my health has declined and my weight has skyrocketed. It's not always rainbows and butterflies, but we have good communication and five kids to keep us going!
Have you talked to him about it? I have said point blank to my husband that he shouldn't have to deal with all my medical stuff, my lack of energy, my body not working, my pain levels, my grumpiness, etc. He reminded me that "in sickness and in health" meant just that and it's not my fault I'm sick more often than healthy ... and that he loves me. It might be worth the conversation to put your mind at ease.
And then there's sex. My husband has a lot to deal with there. He married me, a survivor of sexual abuse and rape, which adds a certain dynamic to our sex life. He has always had a high sex drive. I've been breastfeeding for the past 14 years and have several autoimmune disorders. My sex drive comes and goes and is always lower than his. We realize this, and we've worked out ways to make it work. For example, I usually take pain meds right before bed so I can make it through the night without waking every 10 minutes from pain. Many nights the meds I take combined with the exhaustion completely knock me out. He has my permission to make a move when he comes to bed and see how I respond. If I respond favorably, good for both of us. If I hit his hand away, he rolls over and goes to sleep. LOL You figure out what works.
Thank you all for sharing your experiences and advice. Really glad to know that there are individuals that understands me.
My husband that I married is a good man. He is really understanding and caring and takes care of me when I'm not well. He is the kind of man who likes to keep things to himself. So, communication is not really effective between us. I'm the one who is open in expressing my feelings but he is on the other way round.
After 4 years of marriage, finally he opened up and expressed his dissatisfaction in our sex life. With this disease, as what we all know, we tend to get extremely tired especially after a long day at work. Sometimes, I will fall asleep totally, unaware of his desires when he tired to wake me up during the night.
Honestly, his sex drive is higher than mine. After all the arguments, he told one of my friends that he is tired of me and he wanted out..But till this day, he is still staying beside me and the bond between us has become a lot stronger. I have also learned that I have to push myself towards having a more meaningful sex life.
However, deep down inside me is worried sick..Is he staying because of sympathy..or is he staying because of love...And I have longed for the love words ever since the arguments started..How I wish I can hear them back..;(
But I'm really inspired with all your advice..and I'm looking forward to try some.TQ.
ILIKA I just burst out laughing in my living room re. your wanting to to club your hubby with your tea kettle insight. Thanks for sharing, yes you are normal and yes- you made a good decision not to go after him ;) Just waits till he leaves the toilet seat up again, YIKES ;)
ilika said:
Wow. Just, wow.
First off, let me just say: Marriage is hard. Marriage is so freakin' difficult, and I can't even use the "f" word I really want to use, out of deference to other people on this site. So no matter what you've been told or have seen on TV or what other people seem to have -- marriage is already a giant stressor without the benefit of chronic illness.
Now throw in a difficult, incurable illness that makes you tired and has you in pain, along with treatment that may include scary-expensive medications that can kill you. You're in your early thirties, right? The prime of life, and this happens to you, when you should be at the point where things are really falling into place.
What concerns you?
Are you feeling like your spouse may not find you as attractive (psoriasis is not sexy, and PsA can make sex awkward or painful), and so maybe you don't feel as appealing to him? Or did the illness just zap your sex drive completely? Or maybe you're so depressed that the last thing you feel like doing is having sex?
Do you feel like the person you're married to has to take care of you all the time while you do nothing to take care of him? Or he has to keep his job so he can keep the health insurance you desperately need? That he feels trapped? Are you thinking he might be staying with you strictly out of guilt, that even though he wants out of the marriage he's a good person and couldn't do that to another person he loves but maybe doesn't like too much right now?
Are you afraid to talk to him about this because of what he won't say -- or what he might say?
Ideal relationships are those where the two people love each other, want to be together, and see a future together. I'm not including everything else that helps -- having stuff in common, mutual respect and caring, etc. -- because it's a long list, but is there a possibility that you and your future are suddenly very murky? Not just to him, but you? All of us on this site hope for a miracle cure, but that's still a long shot. Having PsA means that remission may not be possible, or short-lived, and that things can get a lot worse.
I remember watching a movie where the guy falls for a woman who has Parkinson's, and a spouse of another Parkinson's sufferer tells him to get out while he can. Because Parkinson's took away the woman that this man loved, and left him nothing but a burden where his wife used to be. I think about this movie all the time. I wish I didn't.
There's also a warped faction of people that have spouses/partners/whatever whose main appeal is that they are ill, because those people desperately need someone who needs them, or need someone who has to depend on them. There's a psychological term for it I'm having trouble recalling, and it's not co-dependence -- although co-dependence can also be an issue.
I've been with the same guy for more than twenty years. I've been diagnosed for four years. I also found out I was pregnant (shortly after diagnosis) and then lost my job in the giant economic meltdown of 2008. I actually worked in the sector that was the catalyst for the whole meltdown. And my toddler -- and toddlers are already stressful, just by themselves -- is diagnosed as being in the autism spectrum. Plus, my husband hurt his back working, and has been more disabled than me for the last four months. I am a giant stress monster.
I do love my husband. And about two hours ago, I considered beating him to death with the teakettle that he -- once again -- shoved into that place between the stovetop and the ventilation hood where it bends and distorts the teakettle. Why he doesn't just put it on another burner or on the counter is beyond me. But I didn't beat him to death, for a number of reasons, although I wish the top two weren't that (1) it would be too hard on my hands, wrists, elbows and shoulders and (2) that California is a death penalty state.
But this isn't about me. This is about you. What's going on, specifically? Venting to other PsA spouses is a good start. A lot of people on here have an even harder time than me. What's bothering you the most?
Keep in mind, you would probably be having the sex issues even without the PsA. Lots of couples struggle with different levels of sex drive at different points in their relationship. I know it sounds trite but communication is key. Have you both tried counseling to address both the sex issues and the relationship issues separately? Remember, you have a right for your own needs to be met too, be it sleep, rest, pain management. Spouses change to meet the needs of the other, and *respect* those needs.
Reen said:
After 4 years of marriage, finally he opened up and expressed his dissatisfaction in our sex life. With this disease, as what we all know, we tend to get extremely tired especially after a long day at work. Sometimes, I will fall asleep totally, unaware of his desires when he tired to wake me up during the night.
Yup Marietta..communication is the key to a successful relationship...It's quite hard to find a counselor for sex here in my country.. tried once by browsing through the net but end up with a gynae who didnt even want to hear it from us...but makes assumptions himself instead..
Anyway, thanks for the advice..Ill try finding other counselors that could help us and also does understand what PsA is.
That’s one thing, thankfully, that’s never been effected…my sex drive. Even when I’ve been really poorly and in worse than normal pain my fella will give me a gentle massage and the closeness and tenderness he shows promotes intimacy between us. It makes me feel so much better, pain is lessened, I feel loved, I feel sexy and wonderful.
Both my grown up sons live with me so we have an agreement for them to leave the house free on certains days times etc …and believe it or not, knowing I have those ‘times’ set aside gets me feeling ready for intimacy, but its always been an agreement that this is our time to be together and spend quality time which may or may not include lovemaking.
I think men need to know you love and value them for themselves and putting aside time to spend with them, and them only, so they know they are your only focus, makes up for a lot of the time we spend making sure everyone else is ok
There is a phisiological benefit to lovemaking BTW. Its does stimulate the production of a number of hormones that not only allow more sleep but also pain management, lower stress, etc etc. It doesn't require orgasm or even intercourse to have those benefits. I'm a statistician not a sex therapist BUT once you get out of the habit, it becomes increasingly difficult to happen. Regular activity (it doesn't hurt to schedule it either) does have a lot of benefits and makes it 'easier" It can be as simple as mutual massage... (so to speak) If you hands are too tired/stiff there are a number of massagers available. Its amazing what even 10 minutes a weekcan do for a marriage AND your PsA.
Heres more: http://www.webmd.com/sex-relationships/guide/10-surprising-health-benefits-of-sex
I also wanted to say that when my husband and I go through bouts of constant arguing, it's usually because we're not communicating what we're really feeling and are dancing around things. Living with PsA we, and our spouses, have to say DIFFICULT things. We have to hear difficult things.
As difficult it was for my husband to say that PsA had ruined HIS life and taken everything he loved away from him, I think it was more difficult for me to hear it. For a while there, when my health was especially bad and I was especially bad at dealing with it, it was ruining both of our lives. We didn't have sex. We didn't go hiking at all, when we used to hike at least 3 times a week. I didn't much venture out of the house until I got my canes and my wheelchair. It hurt for him to touch me and he became afraid to give me even the gentlest hug. More money was being spent due to my PsA and less was coming in. It was stressful all around. Until we learned to live with PsA, things were bad. But we talked. We figured out how to enjoy the outdoors despite my limitations. We still have a lot to work on, but life is better. We argue MUCH less. I feel much less of a burden and he feels more capable of meeting my needs.
Ouch! Can I just say stockings and PsA effected hands don’t work! Thought I’d give my lovely man a surprise for his birthday ( think dressing up was mentioned by another person earlier) I know from experience that my fingers don’t cope with the fastening so got some hold ups …I now have large red painful welts where I must be allergic to the silicone in the tops. So beware ladies if your skin is sometimes sensitive!
LOL!! I can imagine something like this happening to me.
The night would end with "honey, can you rub this itch cream where I can't reach? and unfasten that one half of one stocking still hanging off my leg. It's stuck". LOL
It's the thought that counts, right?!