For so many of us, getting out of bed is a struggle. Fighting thru pain, physical complications and emotional stress round the clock takes its toll on us for sure but what about the toll it takes on our spouses?
One of the biggest lessons I have learned in recent years, thru near death complications from vascular EDS, is that whatever is happening, is not just happening to me. It is happening to US. We are so quick to shut down and turn inward with our “what if” thoughts and thinking no one has any idea what we are going through but this is the farthest thing from the truth!
When I was obsessing over the potential “what if” outcomes of my brain surgery I had thought I was alone, but one night my husband told me that he had a knot in his stomach and was playing the same “what if” game in his head. He admitted that he even “lost it” on a job site once! (My husband is a 100 percent Italian construction worker guys guy, he NEVER sheds a tear!) He didn’t try to fill my head with the fake positives of “you’ll be fine” etc… (I can’t STAND that! If the doctors don’t know, there is no way for you to, so PLEASE don’t lie to me because it pisses me off. It doesn’t make me feel better!) Instead, he got all my fried favorites and all my junk food loves and we just talked about the “what if’s” together BUT for every negative one we had to come up with a positive one. It is unhealthy to wonder “what if I don’t make it?” and NOT balance it with a “What if I do make it?” The positives were great! One was that we will rescue another dog…we did! Another was that my five-year anniversary of that brain surgery I would get wrist tattoos of ywo words that not only describe me but inspire me…I just got those this past year! My left wrist reads “RELENTLESS” and my right wrist reads “STRENGTH.. It was important to set up positive “what if’s” that are down the road as well as immediately. Doing this was a great way for us to speak our truths about our fears and also to set goals of fun things to look forward to. It made our bond stronger if that is at all possible.
I tend to feel guilty that my husband is stuck with someone who is “broken.” I can’t do all the things that other people my age can. I no longer work so I don’t financially contribute to the home. I am moody and irritable. I eat a lot of meds and something on me is CONSTANTLY in pain, subluxed or dislocated. I sometimes can’t even stand to be around me so I don’t know how he can but he always says, “I married the person you are on the INSIDE. I don’t care what falls apart on the outside. I’m in construction, I’m a carpenter I will figure out how to nail you back together!” I appreciate his humor but feel bad that after working so hard he then comes home and cooks, cleans, does laundry, cares for the dogs etc. I am very blessed to have him in my life and I try to not take advantage of how good he is to me, if I am having a good day I clean full blast, or do whatever I can to contribute.
At the end of the day it is our conversations that mean the most to both of us, we talk for hours about EVERYTHING, we make each other laugh, we laugh at each other, and it doesn’t matter that I am no longer the hot, skinny, pretty, put together girl on the outside, I am still the caring, loving, funny, sarcastic and kinda bitchy girl on the inside that he fell in love with all those years ago!
My husband is AMAZING. He does everything he can to make my life easier and my discomfort more comfortable. When friends come to visit and sees him do things like cook, clean and jump up when he hears the ice hit my glass signaling I need my drink refilled, they make comments like “Matt is like your slave” but he answers them by saying “I do it cuz I love her”. In an in depth conversation he revealed that if he couldn’t find a way to make my pain go away and my joints stay in place then the least he could do is try to prevent it from happening as much as possible. This is HIS contribution to helping me through my illness. He hates to be helpless, he hates to see me cry or doubled over in silence holding my breath because even shallow breaths hurt. He hates when the RSD kicks in and my skin is so hypersensitive I can’t wear clothes let alone withstand his touch. He would love to rub my back in supportive comfort but he cant. He just wants to help. Do I sometimes want to do it myself? Scream that he is hovering? Feel guilty that he does so much and I do so little? You betcha! But then I remember that this is for him too, he needs to feel like he is helping so he doesn’t feel so helpless.
So the next time we want to curl up and be left alone with our pain, or before we are so quick to snap and assert our independence despite our pain, maybe we should all just take a deep breath and wonder how our spouse is feeling, consider their feelings and then calmly react in a more positive way. I know, easier said then done, but I would much rather my husband feel helpful then helpless.
My question for this entry is “What is the most helpful thing your spouse does for you/your condition? What is the least helpful? Also, have you sat down with your spouse and discussed how they feel about how you being sick affects them?”
I wish you all pain free days and good health!
Peace & Paw Prints!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Oh Dani!!!!! You’ve told me lots about Matt but I have to tell you that the love and RESPECT that you too have for one another has very little to do with your illness but most to do about the characters of people you both are. The ability to talk, to TRULY talk, to your spouse, partner, signficiant other, best friend – whatever, about these serious conversations is HARD. And not just b/c the words are hard but because lots of people can’t step back from what you are going through and try to take on and mesh into your own life. So now, you have no help, no understanding and you are picking up the pieces for someone else….as your pieces are being kicked around the room. The fact that you and Matt are so able to cut the bull shit and listen and talk and laugh as 2 soul mates who love eachother endlessly is amazing to me and….if I’m being truthful, makes me a bit jealous that I don’t have the same situation.
Sometimes I want to have a “pity party” for myself and just collapse under covers. My husband will go along with it for a bit by giving me “space” . I don’t really want space, I desperately want it for him to sit with me and rub my hand and hug me and tell me that he’s sorry. That’s it. Just hold my hand and sit with me. Don’t give unsolicited advice on how to fix things; don’t give me advice on how he would handle this problem. Just accept me for who I am and let me cry and feel frustrated without being told that I should feel a certain way or do a certain thing. Just sit. and look at me. I don’t want to turn my pity and sadness into counseling someone else’s sadness , For once, I’d like to have the right to express my feelings without being acussed of “picking” on my husband or “not appreciating” him. Setting the record straight, I appreciate him with my entire being and if I pick on him, it’s nonsense. But instead of having true conversations like the ones Dani and Matt have, I leave my feelings at the side and instead spend the time making sure he’s secure and appreciated.
My DREAM: I am sitting on my bed softly crying, my husband comes to the bed, takes my hands, quietly sits beside me and just sits. There are no words, no anger, no judgment, no points being scored. We just sit.
AWWW! Thank you Christine! I am very blessed and I do know just how lucky I am that we can communicate on such a deep level.
I totally get EXACTLY what you mean when you just want somone to just BE THERE…BE PRESENT! Don’t try to cheer me up, don’t try to fix it or tell me what we should do…just BE THERE!
I can’t tell you how frustrating it is when people, spouses, parents, friends etc, they try to comfort by saying things like “it’ll be ok”, “you need to be strong and hang in there”, “Its not that bad, other people have it worse”, “you need to deal with this head on and you will be just fine”
OMG!! I want to CHOKE these people!! Your spouse especially, should just say “This sux soo bad, I can’t believe this is happening but I am here with you for the whole ride”! Then just sit back and hang out in comfortable silence while sharing the same thoughts!
HOWEVER, not all people do this and it doesnt mean they love you any less, it means THEY TOO ARE SCARED! They don’t know what to do, it is a huge blow to them as well and they just want to make you feel ok (remember alot of people will look to you to say your ok so that they can believe it!) and most people resort to either positive coddeling (you wil be ok, everything will work out fine etc) or efficiency (ok heres what you need to do…This is how we can fix this etc). I try to be forgiving of the people who commit these offenses because I know they are just trying to help!
Christine, if you want him to just sit there in silent support, TELL HIM…Sometimes people just don’t know what to do. Tell him that you LOVE that you have him as a support system and the greatest gift he can give is to be able to be there in a comfortable silence. As for the spouses constant need for reassurance
and accusations of being taken for granted, unappreciated etc…that is insecurity rearing its ugly head. I am very blunt and here I need to say that he needs to deal with his insecurities with a professional. It is not easy but counseling is important when there is a life altering situation and your closest members of your support system are having issues with coping and adding in their insecurities. It helps in the long run both US and THEM because NO ONE is perfect, no illness comes with a manual and we need to find a way to work together so everyones basic needs are being met while focusing on whats most important, our health!
I wish you tons of love, continued good health and strength! You are amazing and an inspiration to me! XOXO
I totally understand your need to have him just sit with you in silence…men dont always get that…but it is a completely justifiable need. Have you tried telling how you need him to react when you are having a good moment…that way he will know how to respond better? Sometimes guys just dont get it…they dont mean to be that way…sometimes they need a little coaxing in the right direction. Im sure he loves you so much and wants to know the right things to say and do…but it doesnt always come out right.
Keep fighting the fight girl! Us girls are holding your hand in silence even if we arent there….and so is God baby…
Dani, you are a very lucky girl. I am also blessed with a husband like yours. I truly dont know what I would do without him. I hope you are well and hang in there, and take each day at a time, thats what I do. I have to say being diagnosed with breast cancer in June has brought my husband and I alot more closer in our relationship. He has been right by my side through the whole treatment. Take Care of yourself and I will remember you in my prayers. Diane
You are absolutely correct I a VERY lucky! I am hanging in there and taking each day as it comes, thank you for your well wishes and prayers!!!
I am so happy that you also have a great support system in your spouse. I am so sorry that you were dx with breast cancer but I am so glad that you have someone who will fight alongside you. It makes the fight a little bit easier and allows you to draw on him for additional strength (and vice versa).
I often find myself saying that being sick isn’t always a curse, but a blessing as well because it brings relationships closer, and has brought me in contact with so many wonderful people!
I wish you the best of luck and health while you go thru your treatments and I will keep you in my prayers as well. Thank you for taking the time to read! XOXO
A supportive spouse is a blessing for everyone. I lost mine on April 18, 2008, and never realized just what he did for me until he died. He always kept negativity away from me. That is the best thing he did. When I was too tired for company, he felt my vibes and knew when to ask visitors to leave or put a do not disturb sign out. He worked hard, cooked, cleaned, taxied, everything. I wish we had talked about the stresses my illness had on him. The thing I like least was the guilt I felt because I was no longer the wife he had fallen in love with. I felt guilty that I couldn’t physically or emotionally take care of his needs because I was so fixated on my illness. Thanks for sharing Dani. Give Matt a hug for me; he deserves a purple heart.
I am so sorry that you lost your husband. But you have overcome so many obstacles and you yourself are a pillar of strength! Though he is not physically present, he is still in your heart and can still be a source of strength for you to draw upon. Don’t forget you have your EDS FB family as well.
Matt says thank you for the hug! LOL!
Thanks for sharing! Sending you tons of love, strength and positive energies!
My husband has been by my side throughout my year long battle with cervical cancer. I always knew in my heart that it was going to be ok…but that “cancer” word is scary no matter what type it is. He was there with me through the tears…through the biopsys…the surgeries, the two hour trips to Duke, the follow up visits…then the paps that came back not good even after two surgeries…he was right there at the head of the bed letting me squeeze his hand while they poked prodded and scraped everything…and tears streamed down my cheeks. And after all that…we went to my last visit at Duke on Sept 30th and all the poking prodding and scraping results came back completely and totally NORMAL. No abnomal cells at all. Thank you Lord….and thank you for my husband who was there with me through it all. I look around at some of the women in the surgical oncology unit at Duke and some are there alone and I am that much more thankful for my husband. My mom or sis would have been there too…but he is the other half of me and the one I chose to become one with, and I am so thankful that he is not too macho to sit through a pap…when I was afraid and needed him the most.
If you are the partner of someone with any illness dont underestimate how much they need your support…even if its just sitting there in the silence and holding their hand…
WOW ERIN! Praise the Lord you are in the clear now after all you have gone through! That is WONDERFUL news! You are very lucky to have a wonderfu husband who was able to “man-down” and not be too macho for the pap portions of your ordeal. Most supportive men would have sat their supportive butts in the waiting room for that! (Not that there is anything wrong with that either cuz some are squeamish but at least go to the appointments!)
I am so happy that you had a strong support and you came through your ordeal together and a stronger couple for it!!
Best of luck to a happy and healthy future! Thanks for reading and sharing!
The most helpful thing my husband can do, meaning if he does one thing, and one thing only for the next 100 years is to learn about what can happen with VEDS and research on who to call when the need be there and the time is allowed to travel there. Besides that I have 2 other items needed. My second most needed item, and the least expected but most immediately appreciated thing is to scrub the bathroom tub. I love to take a bubble bath, but the scrubbing is always hard on my knees as I always end up with bruises on them, I work a full time plus more (AKA on 100% commission) job and dont have time for the most common chores…with the economy as it is and the current climate on the mortgage industry (my industry) I dont have the funds either for hired help ( never had that kind of ext ra dough anyway with all the extra medical expences I’ve had). Christine & Dani. the 1st most needed item is a complete understanding of what we need and that which would be the most favorable and weighted in need…a shoulder to lean on, a ear to lend, a tear to add to the Pot, or a shout to add to the anger. Presently I am left in the dark silent, and lonely presence of my bedroom when I am most angry or fearful of what I am going through. Its not a good place to be.
I am so deeply saddend by the last 2 sentences you wrote. You should never feel alone. There is a large EDS community on Facebook and I encourage you to reach out and build a support system for yourself through that avenue if you are unable to generate support through friends, family and your spouse.
As far as your spouse is concerned, there can be a number of reasons for his lack of support. It can be overwhelming to understand the concept of this illness and being a fellow VEDSer, I completely understand that at the end of the day the big picture is that this is a potentially fatal illness. WE have no choice but to understand this as it is shoved down our throats when we look at facts and statistics, others close to us can choose the option of denial, and many do. Have you gotten him involved? Invite him to doctors appointments etc? How about printing information out for him? Also it may be wise to get an “in case of emergency” set of instructions with people to call, travel info etc together for him. Maybe making a “date to discuss” with him exactly what you are dealing with and what your needs are and asking him if he has any questions. The best choice may be to seek counseling. Not marriage counseling but more like “crisis communication therapy”. He may not know how to deal with his insecurities, and doesn’t want to appear “less of a man” by showing any sign of weakness by showing concern and asking questions (you know men! They won’t even stop and ask for directions! LOL!)
In counseling you can both discuss your fears, and your needs and find a way to communicate better. If he seems resistent just gently remind him that this would make YOU happy and a happy wife equals a happy life! But if all else fails please be sure to reach out to the EDS community. We understand and are there for support.
As far as the cleaning aspect, again this can be talked thru as part of a compromise, if you can’t do that chore then ask him to step in and maybe in return you will cook the dinner of his choice that night or something. If all else fails I hear the scrubbing bubbles do all the work!
I really hope that things turn around for you and please know that you are never truely alone!
Best of luck, health and strength to you!
I hope in 5-10-15 + years time Peter and I have the same relationship as you and Matt…Peter is learning – we are a year into our relationship and the last 2-3 months is while we have been living together that it has really dawned on him just how much I can and cannot do without help. He knows this frustrates me and he at the moment is in the ‘efficiency’ stage of ‘well…maybe you could do this task THIS way and see if it might help’ or his least helpful right now ‘maybe if you didnt have a half hour/hour nap during the day, you wouldnt be awake all night’…When I cuddle up to him and start to cry, I know he feels utterly helpless, and some times, he actually starts to cry too. Other times though, he seems to think this is a cry for affection and tries to turn it into ‘lets get busy’ kinda deal – poor bloke lol – doesn’t quite yet know how to cope with me…truth is though…I don’t even know yet…
I hope one day we come to some middle ground where he can acknowledge what is the appropriate response, even if that response is simply nothing more than a hug and a cry.
ATM the biggest thing he does to help me is helping shower me which for me, is one of the biggest losses of independance for me…showering is meant to be a ‘chill out’ time unless its a ‘special shower’ WITH your partner…and with the shower we have, we can’t even HAVE the ‘special shower’ – its in a narrow bathtub – he stands outside passing me things and leaning in to wash my hair/back/legs/feet…even when I have a bath I can’t have one alone as I am prone to passing out (yeah there’s a lucky draw – EDS Hypermobility/suspected classical or kypho cross over, Fibro, CFS AND currently undiagnosed but suspected POTS/Dysautonomia…) – My mum is helping me go to the bathroom when I need to…I love that I have these people helping me…but I wish I never needed the help in the first place…
The LEAST helpful is when he makes comments that HE has put HIS life on hold for me and that HE has changed ‘a lot’ in his life to be with me…my response is simply this…’I have had to change my whole LIFE to live with EDS and he knew about my medical conditions from the get-go…he chose to love me, issues and all and for that, I thank him but that it’s not just HIM having to live with me and my condition, that I have to live with them too’
Love your work Dani!
Awww! Thank you for the compliment! I know you are having such a rough time right now with all that is going on but it does sound like he is trying. It’s also difficult because he is young yet (remember guys mature slower then girls!) and being with someone who is sick is a very big undertaking! It is physically, and emotionally demanding for them. I am happy that you have both he and your Mom to help care for you, and now that you are living together he is probably just trying to get adjusted to this big change! Living together is such a big change as it is but add in the fact that you have a round the clock disability that suddenly becomes his responsibility as well…well thats huge!
The best advice I can offer is to just gently tell him what you need from him when you need it. When you are snuggled up and crying, and he wants to “get his groove on” just kindly let him know how much you love him being so supportive of you and that you just want to be held a while. Our spouses are not mind readers, sometimes we just have to let them know what we need. His trying to fool around with you may just be his way to distract you from whatever you are going thru or to distract you from crying and his feeling a bit uncomfortable.
As for him throwing around the fact that he has had to change alot for you and your condition, again you can politely tell him how much you appreciate him for that but if he is wanting to get married he needs to realize it is while in sickness and in health! I am proud of you that you let him know that YOUR life has had to change drastically as well. I am sure that you guys will be fine as long as you keep communicating!
Thanks for sharing sweetie!
Best of health and happiness to you!! <3
I may not be married to my boyfriend but he has been wonderful. He helps me out with my son so much. He works with him with his soccer and plays games with him outside when all I can do is sit and watch. It makes me feel so bad that my son does not have the active mom that he should and at times he does get upset about it and tells me that his dad’s girlfriend is more fun, but Brandon is great at stepping in and defusing the situation and cheering me up afterwords.. At the same time I feel so horrible that Brandon is stuck with someone that just keeps falling apart. It can not be fun for him either having a girlfriend that can not do all the fun things he likes to do either because of worrying about things coming out of joint or that I just can not do them anymore. I wish so much he would have been able to know the old me before I started the run down hill.but he has been great with helping me with house work, cooking, and the help I needed after my last knee surgery and I love him so much but a small part of me worries that some day the time will come when he gets bored or tired of having a girlfriend that he can not enjoy all the fun stuff with and decides it’s not worth it and sends us packing. Even thought I dont think he would ever do that there is still that small what if. What if he does? What will my son and I do cause living alone at this point is not the wisest ideal. Which is way I do my best to suck up as much as the pain as I can. I dont want him to have to deal with more then he needs to becouse he worries all the time about me and I would be lost with him there to keep my spirits up, He always has a way to make me laugh and forget about the bad things that have been going on in our lives and he is an amazing 2nd dad to my son giving him all the things I can not.
Danielle, that is amazing that your boyfriend is not only there for you but for your son. It doesn’t matter is you are married, he is your spouse just the same and when he commits to you, he is committing to your son, and he is committing to your disease. He seems to get that and that is wonderful. There are some people in this world that are born caregivers,and they are not all women!
I know how you feel about wishing he knew the “before you” and how you fear it may get to be too much for him one day, and I won’t lie and say that will never happen but you have to appreciate the time you have now with him, he may stay forever and he may leave tomorrow but RIGHT NOW he is loving you and your son, helping you and supporting your physical and emotional needs. Dont live in the past sadness of who you were and wishing he could see that person and don’t live in the fear of the future of the possibility of him not being there, just try to focus on the happiness of the present and the time you have together now. There are a million reasons why our spouses may not be here tomorrow, they can be hit by a bus or leave us cuz we are sick, there is no sense worrying over what may or may not happen especially since it hasnt happened yet! (I know easier said then done!)
As for you being sidelined, you need to find NEW things you can do together. I miss not being able to ski, snowboard and horsebackride anymore…it SUX! But now I have tried kayaking and I love it! My shoulders dislocate, as do my wrists and my hips getting out of the kayak, nearly every trip but we learned that when I feel the presipice of a dislocation or subluxation coming on, I stop paddeling and we bunjee cord our kayaks together andhe paddles us down the river! Swimming is another activity we can do together, water resistence does effect my knees and I tire easily but we just hang out and float, fishing, going to the beach or a park and just hanging out reading or watching a movie on the portable DVD player on a blanket with a bottle of wine after the sun goes down….these things are fun, not the fun we are used to but our lives are altered and we need to learn to adjust! Your boyfriend and son can adjust with you and you can all have a great time!
Keep your spirits up, you seem to have a wonderful guy and a son who know they are loved by a very special woman! I wish you much health and happiness!
Thanks for sharing your story!
I had to double-check your article a couple of times to make sure it wasn’t written by my wife. She suffers from EDS, POTS, Raynaud’s, Narcolepsy etc. etc. She uses the term “broken” for herself as well. Your husband and I are on the same page. We love you for you. Your illness/conditions/disease is not YOU. Sure it affects you, but it is not who you are. I am not the saint my wife thinks I am. I don’t do everything JUST for her. Some of it I do for myself because it makes me feel good. Selfish huh? making my wife feel good makes me feel good. I love to do things for her because I love her. I love to make her happy. I learned a long time ago never to blame her for something that wasn’t her fault. Have a big once-in-a-lifetime event planned to go to that you have been waiting all your life for? Then at the last minute she is unable to go. Do I get mad at her because she ruined it? HELL NO. SHE didn’t do it. Her afflictions did. They are to blame. I join sides with her to become her ally to battle them. we are a team. We are in this TOGETHER. I need to hook the two of you up because I can see just how much you have in common. Anna tells me that altough she might not always be right, she is NEVER wrong. LOL Laughter and sarcasm go a long way in this battle. Doctors often don’t know what to make of us when we joke about life and death matters in the exam rooms. Hope you will look for Anna and I on facebook.
WOW BRUCE! What a fabulous (and might I add absolutely CORRECT) attitude to have! You are right, it is NOT our fault and we are still the same on the inside, but different….if that makes sense!
Anna is very lucky to have someone like you in her life who absolutely “gets it” and no I do not think its selfish at all that some of the support you give her , is because it makes you feel good! You SHOULD feel good that you are such a tremendous help not just physically but emotionally too!
People want to feel they are needed, of course in cases such as ours where there is an illness, that scenario takes on a whole new dimension and it is easy to blur the lines where one feels needed and suddenly feels “enslaved” but it seems like you guys have that in check!
I always make sure my hubby knows how much I appreciate him and I try not to take him for granted! If I can do for myself I do and if I can pitch in I do…
Laughter and sarcasm happen to be the best defense for this illness, crying only causes wrinkles and doesn’t make anything better! Laughing uses lots of muscles for a great workout plus who doesn’t want to laugh and be happy! I think if you can’t laugh in the face of pain and fear this disease will define you, and rule your life! That is SOOO not happening here!
At the end of the day it doesn’t really matter if we are broken, we are still who we are on the inside and that is all that should matter because looks fade, age slows us down , and if you don’t have that connection, that ability to have endless, interesting, funny, serious and intelligent conversation, you never had anything to begin with…most people just don’t realize that until its too late!
Thanks for sharing your story Bruce! You seem like a great guy and another fine example of a supportive spouse!
Good Luck & Good health to you both!
P.S. I am friends with Anna, I will pop on and add you as well!