January 26th, 2009
We talked recently about telling the truth about our disease. When we do that, we need to come face to face with others’ expectations of us, and whether we’re going to try to meet them or not. In the face of our diseases, one of the things we must deal with is that we cannot be all things to all people. We must balance caring for others, appropriately, with caring for ourselves. Finding balance is never about reaching perfection and staying there, it’s always a process of adjustment and change.
This is a women’s issue because most of us women expect ourselves to keep a certain standard of order around us, despite years of feminism. We see ourselves as having to care for everyone. Research shows our brains are organized to multi-task and manage our immediate surroundings, much more than men’s. I have always lived at war with myself with my perfectionism coupled with an ability to be pretty organized but only if things go a particular way – I have trouble being flexible and still staying orderly. In the brief periods in my life when I lived alone I was pretty organized.
Living with 3 people with ADHD, while being chronically ill myself, has challenged my organizational abilities way beyond their limits and most of the time I am overwhelmed and just give up, but then the perfectionism pops in and I struggle up again and try to organize everything. And so it goes. Living with Migraine disease and the other chronic ills I struggle with has taught me something about when to give it up and say it’s not that important. I have also had to accept that my dear wonderful husband will work his tail off to feed us and run the errands and make sure the homework is done and the kids are well and happy and in bed, and he’ll try to keep up with the dishes and keep the mess down, but if I’m out of the action chances are I will get up to a mess because he can’t keep up with it on his own. I care how my home looks, and my pride has had to take some pretty hard hits, many times. Because no matter how bad I feel about the mess, my health is more important than how my home looks.
Lots of chronically ill women I know rely on their loved ones to shoulder a hefty share of work around the house, but lots more try to get it all done themselves, and run themselves into the ground. Letting go is an art. We need to let our loved ones know what we need, we need to communicate about what needs to be done and how best to split the work, and we need to accept that it won’t all get done. We will all, every one of us, die with things on our to-do lists. If we’re perfectionists, and we need to rely on others, we need to accept that things won’t be done to our standards. And live with it.
Chronically ill folk often report that their extended family members don’t understand – they don’t want to visit because our homes aren’t the way they expect. They come to visit and we are doing our best to make them comfortable, but there’s this sense that it’s all on top of something wrong – like icing on a mud-pie. Chances are they have no idea about what we struggle with on a daily basis, what it takes to be chronically ill and just manage the basics of life. Chances are we try to put on our game face and look like everything is okay, because really, who wants to complain all the time, or talk about all this negative stuff?
There’s no substitute for communication. We need to tell people that we’d love to have them visit (if that’s the case) but that they must take us as they find us, and we must lay down some ground rules. They need to understand we are ill, and we are doing the best we can. If coming to visit means pitching in, we need to let them know that. If they can’t accept that, maybe they shouldn’t be visiting.
We can’t expect to change people. Most people respond well to open, honest, uncritical communication. Some people don’t. Some people are toxic to us. A friend recently shared about cleaning her house for the visit of a very exacting and critical relative – one who would apparently not be satisfied no matter what. A key ground rule might be to establish your home as a no criticism zone. A really key part is knowing that you don’t owe anything to toxic people. You need an atmosphere that supports your health and probably the biggest piece of that is having the people in your life support your health. If you had a pet you were terribly allergic to you would be very sad and you would not blame the pet but I hope you would find another home for that pet! Toxic people are like that – you don’t even have to blame them. You just have to stay away from them – to stay alive!
Don’t let yourself be defined by those who criticize you, and don’t let being a woman mean you can’t sit down and rest. You need to take care of you, because without you, nothing else matters.
– Megan
Snake handler image courtesy of Robbie Jim.
Tags: chronic illness, Communicating, relationships, self care
Posted in Communicating, Managing | Comments (1)
January 15th, 2009
Here’s a New Year’s Resolution for you: Tell the truth about your disease this year! How many of us are walking around in a state of denial, not having told the truth to ourselves about our disease, or about what we need to do to manage it? How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don’t know the truth about our disease either?
What do I mean by telling the truth? It may be that many of us would be better off if we didn’t have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don’t live in that reality. Telling the truth doesn’t mean you have to deny your reality, or not deal with it. Quite the contrary, your reality may be that you have to work, and care for your family, but you can’t care for your home to the standards you have always had, or you can’t work the kind of hours you once expected of yourself, or you can’t micro-manage your family members but have to allow them to make mistakes and muddle through. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn’t some kind of nasty self-indulgence, it’s not “No I can’t take care of my child I have to watch tv and eat these bon-bons,” it’s “I must care for my well-being or there will be none left of me to care for others.” It means put on your oxygen mask first on the air-plane or you will both be dead!
Denial is what has us clean one more thing instead of resting, or ignore the migraine twinges instead of taking the medication to treat early. Denial is what has us try to be super-women and men, has us go on hosting huge parties in order to not disappoint the family, or do whatever we believe is expected of us, at the expense of our well-being. Denial is lying to ourselves about our own disease.
This may sound harsh, and believe me if you find yourself in a state of denial you have all my sympathy. I find myself there from time to time as well. It is human, and it will happen. The key is to practice telling the truth, to have it become a habit. You may not want to answer “How are you?” with complete truth in every situation – there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Come here and tell it to me, in a comment. Sign up for the e-course The Six Keys to Manage Your Life With Migraine (in the upper right corner of the page) and tell it to me there. Register for a relaxation or support teleclass and talk about it there. Go to a Migraine Forum and talk about it. Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.
And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.
Here’s a link to a great letter Teri Robert wrote to share with the people in your life to help them understand Migraine disease. I can’t promise you that every person in your life will understand and support you. If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There’s no way around communicating, scary though that may be. If I can support you, please let me know.
– Megan
Heads together image courtesy of Vera & Jean-Christophe; conversation image courtesy of John Wigham.
Tags: Communicating, denial, Migraine disease, self care, telling the truth
Posted in Communicating, Musings, Tips & Techniques | Comments (2)
January 26th, 2008
(or – I wish there was another word for sorry!)
I work with people with chronic conditions, and we talk about this – do I have the disease, or does the disease have me? I also work with small business owners and I ask them – “do you have the business, or does the business have you?” Maybe having a business is a form of chronic disease. If so I’ve got another one to add to my list! But I digress…
My buddies on the mymigraineconnection forum were having a discussion today about apologizing for the effects of our migraines. I think we’re in agreement that there are a couple of meanings of the word “sorry.” One is to apologize, but another is to say “I feel for you” or “I am sad that you feel that way.” When someone experiences the death of a loved one we say “I am sorry for your loss,” but we don’t mean that we are feeling personally responsible for the death. I think English needs another word for sorry!
The famous quote from Erich Segal’s Love Story is “Love means never having to say you’re sorry.” I’ve always had a hard time with that line, but I don’t think Segal meant that we can do whatever we like to those we love without acknowledgement. I think he meant that forgiveness is part of loving someone. And even if we can expect forgiveness from those we love, love still needs to be nurtured and watered and fed, like any living thing, or it can wither. I think part of how we nurture and feed those we love is to acknowledge the pain they feel for our pain, the huge help they are for us, the disappointment, inconvenience and extra work our disease causes. So if I say “I’m sorry” when my husband brings me up a meal on a tray, or when I have to ask my son not to play drums right now, or I can’t take my daughter out shopping, what I really mean is “this disease stinks. I wish I didn’t have it and I wish I didn’t have to ask you these things.”
In Emotional Intelligence author Daniel Goleman talks about the ability to stand back from our emotions and observe them. This ability is what gives us some perspective, some emotional intelligence – when we can “count to 10” instead of reacting right away, we have some power over what we feel. So to tie this in with feeling sorry, maybe when we say “I’m sorry,” when someone brings us a glass of water, we’re separating ourselves from the migraine disease – we’re saying “I am not my disease. I have migraines but they don’t have me. I wish I didn’t have them – but there is a me here, completely separate from the disease, who regrets the trouble and sorrow the disease brings.”
My heart goes out to those in constant pain, in part because of this – the more pain, the more constant, the harder it is to keep that healthy perspective. When I can remember that I am not the migraine, the migraine doesn’t have me, that’s when I can take back my life.
– Megan Oltman
With enormous love and gratitude for Danny, Rachel, Adam, Mom & Dad, my siblings and in-laws and the many other family members and friends who bring me glasses of water, literal and figurative.
Lunch tray courtesy of Wordridden/Jessica
Glass of water courtesy of Venkane/Nevena
Tags: acknowledgement, apology, appreciation, Communicating
Posted in Communicating, Managing, Tips & Techniques | Comments (3)
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