Any chronic illness disrupts so called ' normal' living, so its hardly surprising that psychologists have found many chronic pain sufferers can experience feelings of:
Shame and embarrassment. Worry about being a burden or “dependent.” Fear of rejection. Overwhelmed by handling a relationship and the demands of living with illness. Guilt about not being “equal” to partner. Struggling between feeling isolated or alone and wanting to be with someone. Missing emotional or physical intimacy. Feeling undesirable, out of control or helpless. Feeling guilty that your partner has to put up with or cope with you. Judging yourself as “less than.” Feeling trapped in your body.
I really identify with the majority of these findings, and it got me wondering how many sufferers have found EM to be a relationship buster. In other words, how does EM impact on our personal life.?
Married/ got a partner- how do you balance your condition in a relationship?
Single or alone - how do you manage the dating game?.
Note: We hope to compile 'The EM'ers guide to handling relationships' with your tips :)
Thank you for this topic Mads. It is definitely an important one. Chronic pain/illness has such a profound effect on relationships. I will definitely be trying some of the ideas listed on the link. My fiancée has seen some of my worst flares, sees that I’m in pain during a flare, but doesn’t understand the extent of the pain. EM has messed up so many nights out for us when I’ve had to sit the majority of our dates or had to leave because it was too warm in restaurants and what not. The night time flares REALLY kill the romantic aspect of things! I find myself getting very irritated with him sometimes because I’ll be floored in so much pain and he will throw out a comment that pushes me the wrong way. And then I feel horrible because it’s not his fault he doesn’t have the disorder so it’s understandable he doesn’t really understand that I can’t just “stop thinking about it and you won’t notice it.” Would be amazing if EM worked that way for us all wouldn’t it? He doesn’t Rush me when we are walking anywhere, doesn’t complain about me getting up often at night for wet towels or to run cool water on my hands and feet, has been patient with me not cooking lately so he handles dinner most nights as well as grocery shopping, and for those things I am thankful.
I am here in my situation that I don't wish to be in, but because of medical conditions, I have NO CHOICE - I have been abonded by life, love and any kind of relationship that was once possible ... living a life like a hermit, a recluse and a monk and not liking one bit of it - there is no point in even trying to have a relationship with a normal lady as they wouldn't want to be burdended with a loser like me .... I have lost most everything I had worked so hard for and can only potter around with my guitars and amps and if I didn't have them I would go completely MAD - ......... mind you I am not far from it now but my sense of humour gets me through the days and nights -
I am still hopefull that there might be someone who would like some romance - love & possibly some happiness in enjoying the simple things in life and BE understanding of someone's pain rather than just placating them with " I know how you feel and I do understand" - Unless they have experienced similar pain and anguish then they haven't got a clue as to know what it is like to live with pain on a daily basis - when and if ever I can find a woman like that then I might be able to have a fullfilling relationship with them.... because I DO UNDERSTAND - I have been living with chronic lumbar spine pain since 2000 and EM in my feet since 2007/8 .... and seperated for quite a few years now - NO chance of reconciliation and I can't afford the divorce and don't really wish to go through it all again... I just don't think about it thesedays - too many other thoughts taking up valuable space in my skull, like buying another guitar or building another amplifier or finding some relief for the pain - something to stop the damn pain ....
I don't go out and socialise because I can't, so the chances of meeting some one has diminished quite a degree and left me with very little hope of it ever happening - the feeling of lonliness is sometimes overwhelming, but there is not much I can do about it but accept it and get on with life ...
ILLNESS is a relationship BUSTER ...
Well that's about it for me - no point in crying about it - that is the rotten hand I have been dealt in life and I just have to get on with it as best as I can, like the rest of you guys are doing....
For those sufferers who still have a relationship with their wives/husbands/partner/whoever, good luck to you but be warned even though things seem to be going ok there just may come the day when it will fall to pieces through no fault of your own - it can be devastating and very traumatic and exasibate the flareups even more - I know from personal experience ...
My heart goes out to you ALL who are suffering in silence like me - it is definitely not a great way to live....
Hope is all we have got left in life - there isn't much of anything remaining for the likes of us...
I can't imagine going through this alone. I am glad we are able to have this site so even in our isolation we can still connect to a degree with others.
Meeting someone new may seem so far out of reach when you can't even leave your home. How are you to meet anyone?
Stranger things have happened though. I'm not sure how but one day out of the blue during one of your few times out and about or someone you befriend online may turn out to live near you allowing you to have a relationship again. Please don't give up entirely in finding someone again.
I am married and have a very supportive husband. Things are still difficult however. I have not been able to sleep with him for about 4 years. When He is too hot to touch it certainly makes maintaining a physical relationship a challenge. We are still happy. We treat each other kindly all of the time. I try to make up for my lack of physical nurturing in our relationship by telling him often how much I love him, How handsome he is , how proud I am of him and how grateful I am for him. A little hand holding when you can goes a long way too. He will usually pull away from me before I have to telling me your getting too hot because he can feel the burning starting in my hand.
I struggle with feeling like I don't do enough around the house but he is always understanding. I do try and do just as much as possible every day. That might not be much but when it is the best I can do I still feel proud of my accomplishments. When you do the best you can do it is as if a normal person worked non stop all day.I try and make the feeling of accomplishment similar to that of a normal person that worked hard all day. I say I try and feel this sense of accomplishment because you actually have to make that effort instead of being disappointed about what you couldn't do. If I was able to do something extra difficult for me one day when my husband comes home I have been known to say...toot toot! Yes I am tooting my own horn because look what I did!!!! Even when a normal person may not see this as an accomplishment at all!
I know it is difficult but your positive attitude and general happiness is helpful in maintaining and nurturing your relationships. This isn't saying you don't cry or scream when in unbearable pain jut that you make an effort when you can to be happy. Your relationships are more likely to flourish in this environment than one that is more negative. Just picture when your loved one comes home every day and usually he/she is greeted by moaning and groaning about how miserable you are yet again. He/ she knows you are miserable without being told again and again. If this is how it always goes they may start to dread coming home to such a miserable home. This isn't easy to do when you feel so miserable but with effort and practice it becomes easier. You can still have days that are extra difficult where you just let your misery out just as long as it isn't day after day.
My husband generally waits on me fulfilling my needs when he is home. I try to make an effort to do something for him when I can even if it is just getting him more water when I get up t go to the bathroom. Little things when I can help the relationship feel a little less one sided in the giving department.
I know we are all different and have different relationships and different challenges physically so what works for me may not work for you. I just wanted to share what I do to maintain my relationship and I really do feel we are happy.
I hope for those of you struggling in your relationships because of this are able to maintain or achieve happiness and for those of you without relationships I hope you know there is still someone out there for you. It may seem daunting but I have faith that person will come along somehow.
Thanks Alina - I know what you are saying all too well - I was never one to complain to much but I was the one getting tired of hearing constant gripes and grumbles about how bad her day was at work - making me feel even more damn inadequate than I was - very rarely was I asked "How was your day "..... and when told, it was always a placatory "Yeah, I know how you must be feeling" and then more bitching from her again about how damn bad things are for her" -
I got so damn tired of it and was getting so depressed that I had to end the relationship as I just could not cope - there was no point to having a relationship as there was none - there didn't appear to be any change in her attitude and in fact it got worse as time went on even though we had discussed how I was feeling about everything quite a few times, she just slipped back into her own little world and bugger anybody else ...
But that was years ago now - I still say G'day to her occasionally through emails and phone and maybe see her for coffee once a year - she is still the same - full of her own self importance and little consideration for anyone else ... I don't know what ever atracted me to her - but that was back in the 80's and another world away ....
Still, I am getting used to my own company - But I do still argue with myself sometimes and as usual I damnwell lose ....
My Sense of humour has been my best friend - at least we have a laugh about things and just get about with what brings me some little enjoyment in life... playing the guitar is good therapy for me as I lose myself in the moment with the music that I attempt to make - I even have little flashes of brilliance when I string together a few licks on the guitar especially when I go up the register and bend the high notes with some overdrive distortion and make the amplifier sing - hell I'm even getting goose bumps thinking of that feeling - it takes me to another place - where nothing matters except those beautiful musical notes from my wonderful tube amplifiers that I built myself - what a great feeling - a sense of achievement and a little pride - I usually don't want to stop playing but my fingers even though calloused still get sore after a 2 hour session - what a great therapy it is - it does my heart good and sooths my soul like nothing else can .... I have forgotten what it is like to feel love but I do feel the music stirring my soul most times I play.
Anyway enough of that - I am so glad that your hubby is so understanding and has compassion and empathy in bucket loads - it does sound like a special relationship that should be cherrished indeed ...More power to the both of you ...
I had better get out of here or I will be late for an appointment - Take care Alina and say G'day to Chad for me please...
Oh bless you Frostbite!. Totally understand where you coming from and I pretty much feel the same way. Besides , hard to meet anyone when you housebound. Good job we got our sense of humour!. And , as Alina says, - thank goodness for our EM community. If nothing else I have made countless wonderful friendships because of this site. BTW - hows that song coming along ? . Cant wait to hear it :). Big hug x
I think that EM is not necessarily a marriage “buster”, but definitely puts a major strain.
I am married with children. For the last few years, until just recently, I had no life outside of air-conditioning. I was an avid gardener (I love flowers) and would spend hours and hours each day outside. Then EM struck and that was over. I do hope to get it back, though. I am notoriously stubborn.
So, aside from impacting what activities I could do in general, it also had an affect on intimacy. Flares could happen in the middle of “fun”. It is a buzz-kill. Also, the mental exhaustion I would feel from dealing the the almost constant flaring would not exactly put any form of physical exertion on the top of my list come the evening. It drove my drive into the ground.
My husband used it as a reason to have an affair and leave me, and our 3 daughters, last summer. I guess, in a way, it was just part of his rationalizing and excusing what he had done. Even now, I think he sees me as less than what he wants because of the EM.
I have no relationship advice, though, as it seems I have pretty much lost my husband, even though he has moved back in and we have a baby on the way. He still thinks of HER as something to be desired. Has mentioned that he’d gladly go back to her, if she’d have him. My flares rarely interfere with my life right now, so I really don’t understand his view. I probably never will. I intend to just keep on keeping on. I will do all I can for my family, as I always have, I try not to dwell on my perceived inadequacy.
It is hard to lose the one you love due to something beyond your control and/or understanding. I will keep trusting in God to give me strength to deal with each day. If things ever go back to any semblance of normal, I will celebrate.
EM - so many facets to this condition, mostly negative apart from this supportive site. I feel for all those in a close relationship and the difficulties you face each and every moment - I pray that your partners will not abandon you and if this does happen to you I hope and pray you will find understanding and some degree of strength by sharing and remember you do count, you are worthwhile, you are important, a special gift so let your light shine even if is a dull glow. Celebrate your life, regardless of your health and be kind to yourself in some small way each day. I read a book called "The Law of Moses" I remember this gem - think of 5 things each morning that you are grateful for - it does work! It gives you hope when you are so low that you cannot see how beautiful and previous you are. You don't have to feel beautiful or precious just believe it.
If I had a partner I am not sure just how strong I would be. Living alone and being in a new State for the past 18 months is hard enough and I have managed to keep others at arms length and isolate myself for a majority of the reasons Mads has stated above.
I have not shared with my sister who also lives in Qld. as she has her own health issues. I have kept it to myself except for a couple of friends!! Much easier that way and besides getting around naked and with no teeth - well I am sure you will understand - have a laugh - I am. lol
Shame and embarrassment. Worry about being a burden or “dependent.”
Missing emotional or physical intimacy. Feeling undesirable, out of control or helpless. Feeling guilty that your partner has to put up with or cope with you. Feeling trapped in your body.
I am married -- over 33 years -- and my husband is so helpful and sweet. It makes me feel guilty. When he comes home from work at 8:00pm I like to have his dinner ready. Most of the time I can't (though my daughter tries to pick up the slack there) and he's very good about it but I feel guilty. I can't do any housework to speak of, maybe load the dishwasher (can't unload due to sacral arthritis), pick up some, do a little laundry. He never gives me a hard time about it. This, of course, makes me feel guilty.
My EM has got so bad that, if we go anywhere further afield than our town, like over to Seattle, I need a wheelchair. He says it's no problem but, yes, I feel guilty. I'm no lightweight. The only perk is that I get wheelchair accessible seating at concerts and he gets to sit with me. Front row is nice but I'd rather be able to walk to my seat.
The biggest problem is sex. Suffice it to say that any position makes my feet flare. He's very patient and doesn't try to force the issue. Which -- you guessed it -- makes me feel guilty.
So, yeah, having a good relationship and EM at the same time can be a challenge. I realize that I am lucky that my husband is wonderful about the whole thing. But I really do feel guilty for having to put him through this.
I can also identify with so much of this. Thank you Mads for posting. It’s very thought provoking in the sense that I am reminded to get back to doing some sort of pain management work (my workbook, meditation, creating small daily goals, etc), DAILY - to try to actually prevent myself from being able to relate to so many of the items you listed above.
For me, incorporating a few (or a ton!) of pain management coping techniques helps me to better fight off the depression and low self-worth. But I need to actively do the work daily. I’ve been lacking recently, and have noticed a huge increase in pit parties, etc. No good!
I’m married and have been for over 16 years. Marriage is a lot of work already, and when you throw in high EM pain and flares daily, it does impact every crevice of your marriage relationship - oy!
Our Daughter is the one who suffers. She lay with Her head on my Wife's lap last night and sobbed her heart out saying "She wishes She was a normal person." We of course told Her that she was normal with a condition that she couldn't help. Nearly two years of misery and she is only 14.
In terms of relationships my Wife and I share angst and frustration and essentially Emily's is 80% of what we talk about. It can put things on edge sometimes. I for one can find myself in a very dark mood born out of frustration and inability to do anything about this. We keep trying and the day we find something to bring her some relief will be a great day indeed.
Great topic, since it’s on my mind almost daily. My husband is not very sympathetic since there is very little visual indication of my flames. Sure my hands & feet are discolored, my feet swell and have a heart beat of their own, plus the veins on top of my hands are raised up and become enlarged, but my husband does not seem to understand the discomfort/pain I am in. Unless you’ve experienced this condition it is difficult to relate to it. He is usually cold and I can’t bear the heat. We have settled on 68°F in the winter and 66°F at night. He has an electric blanket & still complains he is cold. Meanwhile I’m too warm. Sleep is disrupted every night. I can’t fall asleep while my hands & feet are flaring (again, every night.) I long to have a fan on, but he can’t stand a fan, even if it’s not blowing on him. So, no fan most of the year. I also get up during the night to run my hands under cool water, get an ice pack, walk across a cold floor or stick my feet in the tub. Because he is a light sleeper I wake him up just about every time I get out of bed or I toss & turn, trying to find something cool to touch. At least 2-3 nights a week, he’ll ask me what I’m doing… is he really that clueless? In the summer, I have to sleep in the other room because I must have a fan blowing on me. I hate having to sleep in separate rooms. He isn’t understanding when I avoid situations like a baseball game where I might have to sit in the blazing sun. I swear I’m going to burst into flames one day. I used to be a snuggler, now I just can’t take the heat. I can hardly stand holding hands most the time. He’s cold and I’m hot. He dismisses me when I try to discuss this condition and I get irritated with him for wining about being cold, especially when it’s 70F. In my marriage, I feel very alone regarding EM, since my husband isn’t very accommodating. I love him, I just wish he would acknowledge this condition is real.
Sounds like we both have it about the same. At least as far as feet are concerned. I have not had any problem with my hands <knock on wood>. I'm a writer so I think that would be the end for me if that were to happen. As it is, the feet keep me plenty miserable.
I've had to move into the guest room. Not because my husband wanted me to, but because I can't bear to keep him awake or wake him up. He gets up early for work. I can't do that to him, even though he says it's okay. No, not for me, it's not. Too much guilt.
Perhaps your husband should read a few stories from others who suffer from the same malady as you. Maybe, if he read about how it is for all of us and how some of our husbands/wives have learned to help us deal with it... couldn't hurt. He may be refusing to believe it simply because he doesn't want to have to admit that there is such a terrible thing between you now. Maybe hearing the stories here might help him accept it.
I can certainly relate to what you are talking about - in my case it was a role reversal for me (see my posting near the top) and it just got to the stage that it was totally unworkable and as much as it hurt - I had to leave - or do something I might regret - I left a few years ago and in a way I am glad I did as I can have the air con on when I want to and sleep when I want or need to without being moaned at or being given filthy looks and being made to feel totally useless and inadequate as far as even having any sort of meaningful relationship - I have gotten used to being alone - I still don't like it but there was no alternative - Living with someone who just DOES NOT GET IT as to how much suffering you have to endure every day basically ALL DAY as well - the EM just wears you out and leaves you totally frazzled and not having someone there who Truly Cares just adds to the injustice of it all ...
I do wish you well with any decision you make regarding your OWN Sanity and any Help you can get for relief for your EM as it would have to be up there with one of the most debilitating disorders on the planet.... there seems no reprieve from it tentacles .....
Cheers & Take Care of Yourself - As YOU ARE the MOST IMPORTANT PERSON TO YOU ....
frostbite (Greg)
Cooma NSW
Australia.
Grama Nay Nay said:
Great topic, since it's on my mind almost daily. My husband is not very sympathetic since there is very little visual indication of my flames. Sure my hands & feet are discolored, my feet swell and have a heart beat of their own, plus the veins on top of my hands are raised up and become enlarged, but my husband does not seem to understand the discomfort/pain I am in. Unless you've experienced this condition it is difficult to relate to it. He is usually cold and I can't bear the heat. We have settled on 68°F in the winter and 66°F at night. He has an electric blanket & still complains he is cold. Meanwhile I'm too warm. Sleep is disrupted every night. I can't fall asleep while my hands & feet are flaring (again, every night.) I long to have a fan on, but he can't stand a fan, even if it's not blowing on him. So, no fan most of the year. I also get up during the night to run my hands under cool water, get an ice pack, walk across a cold floor or stick my feet in the tub. Because he is a light sleeper I wake him up just about every time I get out of bed or I toss & turn, trying to find something cool to touch. At least 2-3 nights a week, he'll ask me what I'm doing... is he really that clueless? In the summer, I have to sleep in the other room because I must have a fan blowing on me. I hate having to sleep in separate rooms. He isn't understanding when I avoid situations like a baseball game where I might have to sit in the blazing sun. I swear I'm going to burst into flames one day. I used to be a snuggler, now I just can't take the heat. I can hardly stand holding hands most the time. He's cold and I'm hot. He dismisses me when I try to discuss this condition and I get irritated with him for wining about being cold, especially when it's 70F. In my marriage, I feel very alone regarding EM, since my husband isn't very accommodating. I love him, I just wish he would acknowledge this condition is real.
I have to sleep alone too Dreamline. 8 have slept in my living room in a recliner for the last 4 years. I can stay cooler out here and I can’t lay flat in bed due to back pain so we both sleep so much better this way. I am hoping to get the money to sleep with my hubby again soon. I need one of those adjustable beds with each side separate for my back and a cooling mattress pad to keep me cool. I found one online a few years ago made of medical grade tubing filled with water you can set to a specific temperature cooler or warmer but I of course would use cooler. I wish I could remember the name of it but it is over a thousand dollars and a little out of my reach right now so I haven’t looked at it in some time.
I'm looking for an adjustable bed, too, Alina. I have a wonderful memory foam mattress because I also have back problems. But when I can sleep with my Hubby, it's not a problem there: we bought a Sleep Number bed a few years ago. I highly recommend it.
They make mattress toppers now with that cooling gel. I need one because that's the one drawback to memory foam- it holds the heat.
I just bought a nice air bed with which to travel. I just can't handle any hotel bed anymore. I don't know what it is, but they all seem to love extra-firm! So I bring my own. The airlines accept it as medical equipment so they don't charge for it to be checked. That, along with my hydrotherapy system and gel packs, as well as Hubby's CPAP machine, all go in one large bag. Thank goodness Alaska Airlines, at least, is great about that. Delta, too.
I'll be happy when I'm able to sleep with Hubby again. If I ever can.
I doubt my husband would read any of the discussions on here. He’s not a heartless man, but I think he just can’t relate to my discomfort especially when he is always so cold. He had to go through chemotherapy over 4 years ago. I guess the chemo does damage to some people’s circulation. I’ve purchased an electric blanket for our bed and an electric throw for the living room to keep him comfortable, but we still struggle over a few degrees in our home. Summer is around the corner, so it won’t be long & I’ll be sleeping in the spare bedroom. It’s not uncomfortable; I just prefer to sleep in our bed.
Mads suggested I get an official diagnosis so the condition becomes something believable. I think she’s right and it has crossed my mind many time.
As Veerla said it is really hard for families and loved ones too. Some people handle their worries as being standoffish or cold . Most of us have encountered medics who were disbelieving - so go figure! . Members ,including myself , have been send to psychiatrists to check that our 'ills' werent psychosomatic. :( Its so important to amass 'evidence'. I know we shouldnt have to, but EM is such a difficult syndrome to diagnose. There are so many differential diagnoses out there. We advise everyone keep a pain diary, log of symptoms and photos. Also, print off information under our Toolbox icon on erythromelalgia. There are video's there too from Mayo clinic that relatives/friends might find easier to assimilate.Thats why raising awareness is so important. Getting an official diagnosis is one step towards being 'believed'. Horrible but true. Imparting information is another. Show your husband the photos of your flares. Visual impact always works best I find.
Have you contacted any Dr's yet?
Im so sorry you have to experience this ((((((((Grama Nay Nay))))))
