A Spouse’s Experience with Support Groups for Caregivers
Throughout my work with online support groups, the non-profit I work with eventually established some for the caregivers, since obviously one could understand that they may also need a place to vent or find resources much like those trying to manage the condition. I was not an administrator or moderator in that particular group, so he did not need to worry that I would see his posts. While I was thinking it would be beneficial to him, his experiences in such groups were not nearly as positive as the ones I experienced. He initially joined just one group, but he did end up trying two different groups since there are tons of groups available even on Facebook alone.
Frustrations over lack of migraine treatment
Compassion is the response to the suffering of others that motivates a desire to help them. During his time within the support groups, Steven found a great many spouses (not all men by the way) who were very compassionate over their spouse’s condition. They were mainly frustrated at their inability to be of any real help. The other common frustrations were lack of treatment options, a lack of doctors willing to take the condition seriously, and anger over what they felt like was a serious lack of new research on potential treatments or the development of new medications.
Granted, he understands that medicating is ultimately not the goal of any doctor over the long-term scope of care of a patient. I also understand that due to all of the so-called “pain clinics” that have been run out of business over the last decade for simply passing out narcotic prescriptions to any and everybody, is part of what makes it difficult for people today to request stronger medications when they are needed.
Lack of compassion
Unfortunately, the most common thing he encountered in the support groups for caregivers was a huge lack of compassion. Most of the people in the groups spent page long rants complaining about how inconvenienced their lives were because of their other half having the chronic migraine. Some of the caregivers had grown to completely resent their partner to the degree of wanting a way out, such as a divorce. This eventually is what made him feel the need to draw a line.
Steven openly admits that he is far from being perfect. “I am not the best husband, not the best caregiver, and not the best person on any given day. But for all of the areas I find myself lacking, the one constant is my desire to improve. I don’t always succeed, but I always try to be a better version of myself today, than I was yesterday.” This began to cause him to resent the groups because the number of people who were just plain angry at their significant other for being sick seemed to far outnumber the ones who showed or felt compassion.
In sickness and in health
So I asked… “What was your overall experience and thoughts on the caregiver support groups?” Steven explained that his overall experience in the support groups was a negative enough thing that it led him to remove himself from the environment. He did this in order to maintain a clear visibility of his own perspective. He went on to explain that he very rarely has any negative thoughts or feelings where it involves my condition.
But that “During the odd moment that I begin to have any of those thoughts or feelings, I immediately go back to a promise that we swore to each other years ago, ‘in good times and bad, in sickness and in health, for better or for worse, until death do us part.‘ After that, all the negativity that likes to attempt to creep in unnoticed, turns right back around and leaves me at peace.” It is important to remember that aspect of a marriage because we could just as easily find ourselves in the opposite role one day. With that in mind, how would you like your significant other to act towards you?
Patient advocate perspective
From my own experience in working with people who have chronic migraine, I have unfortunately encountered a lot of individuals who are faced with significant others who seem completely fed up and who take it out on them. Sadly, I think there are more relationships like that than there are balanced and happy relationships. By no means do I say our marriage is perfect, but we both try to make the most out of our situation.
I have to remind myself when my pain is so high and I am agitated over what seems like every little thing, that I am not truly mad at him and I cannot take it all out on him. He has to remember to help out with the housework or with cooking dinner to give me times to catch my breath. As much as those of us dealing with chronic migraine need a positive support system, so do the ones who are trying to love us. The best thing for both parties is to keep an open and honest line of communication. When something bothers you or you need help, say something then instead of waiting until it has been bugging you for months.
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