Male caregiving for the spouse with fibromyalgia

“Caring is pivotal to keeping the human enterprise going, yet its function is invisible in the organization of our daily lives”, Sheila Neysmith

This is my 50th blog and I have never yet discussed male caregivers! In my book I discussed with the women living with fibromyalgia the issues regarding the people who supported them (or in many cases, those who did not provide support or understand what it meant to be living with fibromyalgia) . Their answers often surprised me. I am one of the fortunate ones who has a husband with a caregiving nature. 2010 019He is my biggest supporter and without him I don’t know how I would survive the pain and fatigue. I generally feel guilty about the limitations of my life and how they have impacted on him. I have long wanted to write about the caregiving strain of coping with people who have invisible dis-eases while the work of the carer is itself often invisible. It can’t be easy since those of us with fibromyalgia usually look  healthy, and even the caregiver must wonder at times if we really are suffering as much as we say we are. The irony of all this is that women with fibromyalgia are usually in this state of hyperarousal of the nervous system because they themselves were once super-carers of others! Furthermore, the guilt we experience because others are taking care of many of our needs is a conundrum we are forced to live with.

Before I retired from my life as a university professor I supervised several graduate students who wrote their thesis about the caregiving strain on women, caring for elderly parents. I knew all the symptoms: exhaustion, lack of support, resentment, guilt, limited time for oneself and so on, but it was generally about women in the sandwich generation, caring for elderly parents while still having children they were responsible for on a regular basis. Since it has been widely researched, this issue of women as caregivers, I now find myself in a reverse position of  living with a husband who is the primary caregiver in our home.  I can watch my spouse first  hand and see much of the publicly invisible work he does as a carer. I am constantly  wondering what he must be feeling when he hears another complaint from me about having a bad day, my frequent bouts of hopelessness, my groans of pain and sleepless nights. The guilt I feel when I can’t go hiking with him, or paddle a canoe, or have travel insecurities and worries is guilt I can’t control as it is based upon loss of control. I know how fortunate I am to have such wonderful support and my heart goes out to those of you without that help and going it alone on this challenging journey.quilts 026 I often wonder what he is thinking as he rarely complains about my constant malaise! Many caregivers  suffer in silence and worry privately about the fate of their loved ones.

Recently I discovered a site in the UK for males who are taking care of their wives/partners with fibromyalgia. One such person is Maurice. He is the owner and author of www.fibromyalgia-support.net  and Secretary of the Rugby(UK) Fibromyalgia Support group. His website FibroLads is of particular interest to me. I have asked him if he would be so kind as to allow me to interview him regarding his own role in the home since his wife has fibromyalgia, and as well to speak of the issues that are of most concern for him and other men in his support group. He has kindly agreed to do this and his wife Mary has agreed to allow him to share his feelings with us. Thank you, Maurice and Mary.

Maurice: What specifically inspired you  and Mary to begin a support group for spouses of women with fibromyalgia ? Please respond in the comment section of this blog.

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
This entry was posted in caregiving as invisible work, caring work, exhaustion of caregiving, Fibromyalgia, guilt, invisible work of caregiving, men as caregivers, pain and fatigue, resentment of caregiving, support group for men. Bookmark the permalink.

19 Responses to Male caregiving for the spouse with fibromyalgia

  1. Maurice says:

    Mary and I started our support group due to experiences in the Midlands and Norfolk (UK) in attending other support groups as members and then finding none in our own area. We had travelled some 20 miles to attend another group which eventually folded due to lack of support.

    I had good PR experience so was able to get a lot of (free) local articles on the new group and we grew that way.

    We still have a problem only 25% of members on our “books” attend meetings, I do all the admin work and Mary talks a lot on the phone to people who have or think they have FM, it has taken over our lives but Marys health continues to get worse so I am not sure how long we can safely continue, there seems nobody able or willing to take our place and I cannot see me being in the group if Mary opts out………

  2. Thanks Maurice. Questions and answers that would be of great help to other men: 1)What is it about FibroLads that helps you in particular? 2)Do only men attend? 3) What are the major issues men as ‘carers’ (I know Mary does not like that term) find the most difficult? 4)What do you find to be the most challenging caring for Mary? I will ask a couple of other questions too so that we an save time: 5)Would Mary be ok with you describing her personality, that is, for example, would you consider her to be a highly sensitive woman, frequently concerned about the needs of others? 6) Does it help a great deal being with other men talking about your roles in these daily struggles with FM? Finally, 7) What advice would you give other men who are looking after their spouses who are living with this invisible dis-ease?

  3. Maurice says:

    The Fibrolands held 3 meeting and we had 2 men carers attend plus me, although some 4 others “promised” they had reasons why they did not make it. One guy had never been to a general support meeting so for him it was a big step and is now an active part of the group and become a great friend, He was a stranger to me and the group 6 months ago.

    They other guy was already active in the group and has some good ideas. We all spoke freely but at the last meeting decided to not hold any more meetings for a while to see if we could get more interest.

    For sure any meetings would need to be 5-10 buys – we met in a pub which was a good idea and just sat around a table, no special room or equipment.

    Yes the group is for MEN – I spoke to several women members about their partners attended and they thought it was a great idea but HE/they did not see any value in attending. Men generally do NOT like talking about their feelings, whereas women are freer in this regard.

    Mary and I see and have contact with 30 or more regular people with FM most with partners – ranging from 25 to 80 in age. Some are still working and overall in varying degrees of pain. Most have other issues with the FM so making treatment hard.

    As a “professional” administrator and computer “wizz” Mary is often annoyed at the way I do things as I may well go over the top. She on the other hand can spend 1-2 hrs on the phone talking to a new member and we send out loads of papers, the sufferer then never contacts us again.

    Some have said “its niice to know there is a group there” but seem to have no need to attend meetings.

    Many of our long established members who are loyal have become more outgoinging and friendly and to them the group has been a life saver.

    The big problem is attitude of family, friends and of partners to those with FM. There is still SO MUCH to tell people and so many QUESTIONS being asked, its an endless and thankless task.

    We have some 5 male members BUT have no contact with their partners which is interesting……. and only 1 man sufferer attends meetings.

    A newsletter has been useful but although they welcome it, never seem to read it.

    We have just started a £5 (GBP) a year subscription and I guess we may loose 75% of the membership as many people seem to think we should run for free, we have had a few grants but need income to meet costs especially if we are servcing 50 members and only 10 contribute to the costs.

    At least a smaller more committed group will be easier to manage, Mary and I are so tired of the effort we have put in for such limited response. This is the way FM hits people and a burden we must all endure.

  4. barbara keddy says:

    Thank you so very much for the effort you have put into just answering my questions given how much work has been required to try to organize the groups and newletter on top of being a caregiver.
    You are rignt, Maurice, generally men do not discuss their feelings as openly as women and given that they have to care for their spouse, most men would consider that this is too private for them to talk about openly and too time consuming. This isn’t all that different for women caregivers as well who say they don’t have time to attend meetings. Yet, Mary has shown that they do appreciate the time she spends with them on the phone.
    In the vast carer research of many decades it has been documented that caregiving was considered to be ‘women’s work’ (unfortunately). Yet, I know so many men who are wonderful carers. It seems like you and Mary are quite an effective team, each of you utilizing your own efficient skills. I can just imagine Mary spending hours talking to people who have been affected by fibro. It fits with my view of what most women do best, helping others express their feelings/emotions. It also reinforces the usual perception of men as highly adept in their own realms. One way of doing things isn’t better, just different as you and Mary have shown.
    Both of you seem practical and generous towards others but tired and ready to give up on the great effort and time required of the groups and newletter. I am so sorry that things did not turn out as hoped for the support groups. Once again the research shows that most groups of this type have a higher percentage of women than men who attend regularly.
    I wish you and Mary many good wishes in the new year ahead and congratulate you on all you have done to heighten awareness of the physical and emotional work required of caregivers. Thank you, Maurice and Mary.
    Best regards,
    Barbara

  5. Andrew Pelt says:

    Great website! Love the content you have on here. Please keep up the good work and I will be sure to visit quite often. Thanks much!

  6. Thanks Andrew! Come again!

  7. Been a while, our rugby group is now in our 4th year and more members are getting involved

    We have set up a Facebook page and thanks to a grant now have 2 laptops a projector and video camera

    Many of our members are now firm friends and we have a lot of younger women in their 30’s with FM

    Have started home visits to home bound members

    Membership 60 or so, having to weed them out we charge £5 a year sub which many seem reluctant to pay so I guess 40-50 hardcore members with 20-30 to a meeting is the norm.

  8. Chloe Paez says:

    I wish there was a group like Mary and Maurice created in the US, near me. We need it so bad.

  9. I am so sorry there isn’t but there aren’t many places that do, unfortunately! I feel so sorry for my own spouse as he has to do so much caregiving for me.
    Best wishes,
    Barbara

  10. matthew west says:

    hello everybody, my name is matthew, my girlfriend who is 19 has just been diagnosed with FM, although has been suffering steadily worsening symptoms for around 6 months. she has taken it really badly, her age must make it all the worse, as does the fact that before she was such an indpendant, strong, active person. i love her with all my heart and i fully intend to stay with her, every step of the way, but youre right it is very hard. i never used to be a very patient person but im having to learn quick! if anything the worst thing for me, at the moment, is the constant mood swings her symptoms cause-she gets so angry about little things that she struggles to do now, and takes it all out on me, which i find hard to take, and then she realises what she is doing and gets even more depressed about everything. im glad i stumbled upon this website-i will be showing it to her, as well as mentioning maurices support group. what a coincidence! he is the leader of the rugby support group-which oddly enough is where i live 🙂 im hoping to learn a lot more about the condition and how i can help ease her pain and help her lead as normal a life as possible. take care guys

  11. Robert Busby says:

    Robert W Busby

    Fibromyalgia is not an illness anyone should take lightly, it causes all sorts of pain for the individual who has it and other problems for family and friends of the persons with Fibro. Most folks tend to shy away from folks with Fibro and that hurts the feelings of the person with Fibro, many friendships have been ended because of Fibro. Read the information compiled at the Fibro web site, you will learn how hard it is on a person with Fibro due to the pain they feel physically, mentally and emotionally. Folks who have been active all their lives are slowly no longer able to be active and can be in so much pain they spend lots of time house bound and even bed bound because of the ills caused by Fibro. As mentioned, Fibro affects the individual and those who love and associate with that individual. Over time many family and friends shy away from the person with Fibro and that is not what we who care for a person with Fibro want to happen. Us family and friends who care for the Fibro person have to find ways to deal with the Fibro Ills while trying to keep the Fibro person as happy and well as possible, this is not as easy a task as it may seem. There are days when the Fibro person is not in the mood for company and conversation is out of the question, but we have to find ways to allow our Fibro afflicted family member to be as pain free as possible, get them up and around, involved in conversations, out and about when possible, and get all of us back to some semblance of a normal life, if there is normal life when a person has Fibro, this also sounds good but is not always easy. My wife has had Fibro for many years now and instead of getting better she has gotten worse and then better and then is now somewhere in-between better and worse, however she does have minutes, hours, days and even weeks she is better but then she has the same amount of time she is worse, no sleep is the big culprit. At times she sleeps well but has no energy, or does not sleep at all at night but in the day time. All of these ills cause havoc with scheduling since we never know when she will be out of energy or just not feel good. As her support person I read all I can on Fibro, do all I can to make her feel good, and try not to become excited when she is not happy and Fibro can cause a person to not be happy very quickly and then problems can cause problems and if I am not careful I have said or done something I did not mean to say or do and have caused her to feel bad or upset her, and obviously, I only want her to be happy and feel better. Fibro pain can and does cause what is called Fibro Fog and once Fibro Fog kicks in, heaven help her and me. I have no idea what to say about Fibro since I do not have it, I am in my own pain and have my own ills but am here for her even when I do not do all the right things. This note is being written cause I need to remind myself I am the Fibro caregiver and I need to not get upset and get over getting my feelings hurt, cause she did not intend to hurt my feelings, so I blame it on Fibro Fog…smiles when I can and frowns when needed. This note is intended to be a positive note for US Fibro caregivers even though it may not read that way.

    Fibromyalgia Caregiver’s PLEDGE TO CARE

  12. This is a wonderful comment. You are very inspiring and I wish you very good luck,
    Barbara

  13. Dear Matthew: You are a wonderful partner and your girlfriend is lucky to have you in her life.
    Best wishes,
    Barbara

  14. Daniel Reno says:

    I’M very great full for the comments in the above writings ,I care for my darling wife who has fibro and will do anything to make her life easier any suggestions will be appreciated. As she is my reason for living

  15. Thanks for you comment Daniel. You are a wonderful spouse and your wife is very lucky!
    Barbara

  16. L Rogers says:

    Greetings from America,

    I met my wife on her 30th birthday and we had our first date that evening. We married later that year (1988) and we did everything together from a small janitorial service to a delivery service. Six months after we married, we went to a group cookout at a park and she decided to play softball while I was trying to play Frisbee golf. The next day she could hardly move and we both chalked it up to the ball game. Over the next few days, the pain did not go away and we went to the doctor to see if it was something else or ??? She was told it was all in her head, tested for Lupus (negative), tested for Muscular Dystrophy (negative), Multiple Sclerosis (negative) had biopsies, electromyographies, had several rounds of steroids, and had to endure more blood tests, pills, pokes and prods, that she became allergic to doctors.
    The final straw with doctors came when we were sent to a testing lab to run a specific test during a time when she was having a really bad week. We had to walk from a parking garage to the lab, they had no wheel chairs available and we did not have the ability to purchase a scooter. it took us almost 20 minutes just to cross the second floor walkway across the street because she was hurting so badly. She was literally in tears when we got into the lab. once there, they told us that they would have to do a pap smear first before they could do the test that was ordered, and once they did that, refused to do the test. The doctor sat in his chair, turned around, crossed his legs, and asked me “What do you want me to do, pull a diagnosis out of thin air?” I told him no, I want you to run the test that was ordered, he then refused again and I headed for him, but was stopped by my wife.
    She cried all the way home from that appointment, over 2 hours, and we gave up on the doctors, when they told us later that if she refused to take the steroids, she would be dead within 5 years. Her formal diagnosis came from her final electromyography.
    We started looking at natural health and supplements and found Valerian Root and a few other things. Valerian is a nervine, which means it helps heal nerves and can help with back pain as well. Garlic is a wonderful antibiotic, St. John’s Wort for depression, Vitamin D @ 5000 ui daily, Vitamin B complex, Flax oil, and fish oil. We have been married for 25 years coming up this December, so remember that there is a reason they call it practicing medicine. Yes she still has bad days and yes there are still problems, but if you truly love each other, you work through them, never give up, never surrender.
    As far as other things that may help, Chiropractic, Massage therapy, and Reiki help. We try to avoid resistive exercise for her, ( no weights, or water exercise for instance as they resist the muscle movement). I do what I can to help with housework and cooking. I do all the driving as I do not want her to experience a sudden twitch and have an accident. I went to school to learn massage therapy for her benefit. As difficult as things may be for me, things are even harder for her.
    She used to be very active and independent until this hit. She has had to learn to let me take care of her. She has had to learn how to manage her pain, to sleep comfortably enough to be able to rest, to eat without dropping her utensils out of reach, and worst of all, to deal with me. 🙂

  17. I think that dealing with you is wonderful for her. I congratulate you fro being such a great caregiver!
    Barbara

  18. Bruce Johnson says:

    i just happened upon this site and am anxious to read more of it’s contents. Funny thing is I was looking into the Canadian Tax credits for caregivers but suddenly decided that searching for any ideas from other men on how to care for their wives that suffer from fibromyalgia was something more important to look at right now. I have a lovely wife who suffers incredibly from fibro and is now to the pointt of hardly ever leaving the house. Yes, I do pretty well everything for her as far as taking care of the shopping, house cleaning, laundry, all the meals etc. (I could go on and on). I used to frquently have lots of thoughts about my wife and her condition as I have read in your blog. Recently I have taken the approach of focusing more on how she must be feeling each time her remarks seem mean or out of order. I just need to express to other husbanda, boyfriends significant others that I honestly feel my wife is sometimes using me to try and get her mind off of the constant pain and she really does not mean to be making me feel bad as a result of her sudden outbursts. It can be difficut totry and comeuo with things to say or talk about that could make her feel a little bit cheerful. Her anxiety level is so high I do not know what to do, even though our doctor treats her for that with various medications. Well, I need to go right now to prepare some supper that hopefully helps her to feel a little more settled today. I will bookmark this site and get back to it very soon
    Cheers
    Bruce
    Kelowna, BC

  19. Dear Bruce:
    I was thrilled to read your comment as it isn’t often I hear from partners about the strain of care giving. I read your comments to my husband first thing this morning and he could relate to all you have to say. Added to which is the guilt we sufferers experience knowing hos difficult life is for you as well.
    We live on the east coast but our hearts are often on the west. We have two sons and three granddaughters in BC and have spent sabbaticals at UVic and UBC plus many a winter in Vancouver. Right now my husband is putting pressure on me to go to BC for a visit since we haven’t been there since last Easter.Like your wife, all I want to do is stay home.Again, on my part, I feel guilty but travel is so exhausting and hurts so much. Being away from the comforts and security of home is a challenge for me.My anxiety level is so high when traveling.
    Like you, my spouse does all the shopping, laundry, most of the cooking and housekeeping chores. I am so fortunate and think of those who have no one to help them- their lives must be so much more challenging.
    I can understand the daily struggles you have with trying to make life less of a struggle for us and how we often forget to show you the gratitude we feel. Lashing out at you is the result of the frustration and pain/fatigue that plagues us. I know you already know this.
    I hope there are good days when your wife laughs a little and the pain has subsided somewhat. In the midst of a flare-up life becomes even more complicated. Hopefully she exercises a little with at least walks, is able to access a therapist who can get to the root problem of life long anxiety, and has hobbies that interest her as a distraction. She has to remember that movement in any form is key to her life (in spite of the pain she feels when doing it). Mindfulness and meditation are absolutely wonderful but requires discipline. Practicing what I preach is not easy for me but I try.
    Sending you both my very good wishes,
    Barbara

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