This is the result of facing my worst fears, and experiencing my worst fears as reality, during my entire adult lifetime. As I age, I find I am less inclined to pretend that I'm just fine, when a crisis occurs. My worst fears take the forefront these days, and I'm pretty aggressive about it."
I began to reflect on how often I have said "I'm fine" when in fact, I'm not. When Nick was small, I remember feeling a terrible sense of betrayal when I admitted needing help at home, especially because in my country, the system is so overtaxed that one has to grovel and beg for even a few hours of home help. It took me a long time of being exhausted and desperate to admit that I could not manage on my own. All that time, I presented as being 'very together' and happy. The words "I'm fine", I began to realize, were working against me and my family. So, like my online friend, I began to experiment with "I am not fine". A major family crisis in 2004-05 gave me the courage to be honest and forthright in expressing our family's needs. Now, I have no trouble at all using the words 'family breakdown' or 'crisis' to get the attention of social service providers whose job it is to say 'no' to people who are 'fine'.
Coincidentally, I came across an article today called "Putting the "I" in Caregiving". There's some good advice there for those of us who say "I'm fine" too often for our own good.
11 comments:
I love that you put this to words. I am the mother of a child with profound disabilities and complex medical issues. I feel intense pressure to put forth a confident, compentent and coping image. There is the sense that everybody...health professionals, my family and so on need me to keep this all together, all the time. I also worry because I am aware that if I don't hold things together the system is not designed to do it well on my behalf. I am grateful to see someone talking about these issues.
Laura
I think mothers like us all feel this way. For me, it got a bit easier when I began to pull a tight network of support together, then I began to relax, until a crisis happens, that is. Thank you for commenting and good luck with balancing vulnerability and strength in your life.
Love this...my daughter is five and I have still not learnt to say "I'm NOT fine!" I guess it is time I try too! Thank you
Love this! My daughter is five and I am a single mother of four. I have still not learnt how to say "I'm NOT fine!" I guess it is time I learnt...thank u
Hi Donna -- I think you hit on a really important topic. Sometimes I think people around us don't want to know when we're not fine. As Laura noted -- everyone is counting on us to keep it together.
Sometimes when we express that things aren't fine (not so much to service providers but to people around us and even within the disability community) I think we may be met with a silence that kind of represents the sense that we are letting the team down.
Thoughts?
Yes, that has happened to me, too. When things are bad and I've said so to my friends and family, I find they really don't know what to say. Sometimes the details are gory! And the issues are often medical for us. So I don't blame them at all for not being able to actually jump into the conversation or know how to help. I do find that having Tyze (www.tyze.com) helps to kind of tease out ways that people can help without me actually having to figure it out and ask. I've been thinking a lot lately about how to help others (and myself!) figure out needs and parcel out helpful tasks to willing others. It's not so easy!
I'm late to this conversation but think it very important. I have a daughter with developmental disability and for many years my husband and I presented as 'fine'. But when we felt the pressure building and we started asking for help from family and friends we were met with excuses or 'we're just not comfortable'. I ended up suffering from caregiver burnout - a four year long deep depression and my husband did not know what to do to help me and still no help came from what should have been our support. Our marriage became the casualty and my belief in society has taken a huge blow.
Hi Kate, I'm so sorry that you had such a tough time accessing support for your daughter. And I'm deeply sorry that your marriage was the casualty. I think that unfortunately, your story is not uncommon among parents of children with disabilities. We are proud and strong for years until the 'dependency work and struggle' (as distinct from the loving parenting) begins to chip away at our energy and hope for the future. Then, when we finally swallow our pride in order to ask for real help, there is none. Parents are not told (certainly you and I weren't) that there is no deal based on an ethic of reciprocity, ie. I looked after my child all these years so now it's your turn. I believe that networks of support are part of the answer and that there will have to be an understanding of supporting caregivers across society, much the same as the green movement is trying to embed their concerns into all areas of society.
Hey Donna:
Thanks for writing this. I think "I'm Fine" is a lot more than just the face we present to the world. Its our guard against a system/society/family/community saying "maybe they're not coping with their child with disabilities, maybe it's too much, maybe the system should step in and take that child". I only realized years later how close I came to losing Mike when a nurse said to me "we're going to admit him for a few days to give you some rest". Mike was actually very sick, but that wasn't what the nurse was talking about. So "I'm fine" is our way of protecting our family... until we realize that, of course, we're not fine at all.
Jeanette
Oh my goodness, you are right. I never thought of this perspective, but it rings deep and true and scary. Thank you, Jeanette.
Thank you for sharring
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