“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. He 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.
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.
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………
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?
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.
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
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!
Thanks Andrew! Come again!