Friends and Family
[Ed note: this was originally written to an online support group, responding to questions from a woman named Ann.]
INTRODUCTORY CAVEAT: Ann, this letter of mine to you was triggered by a wave of empathy because you spoke of breaking your leg. I was overcome with it. Then, as I got underway, contemplating the behavior of your sisters, one thing led me to another, and I wound up sharing with you some personal insights about family tolerance and behavior re our DD, that I had not previously arrived at. Forgive me if my insights are not applicable to your specific situation, but maybe they will be more or less helpful to someone else who reads this.
To hear about your broken leg made me cringe. Tell me the "fall" or accident didn't exacerbate your CFIDS. That's what I want to hear.
I had the flu-like onset in Dec. of '89, and remained functional but with chronic asthma newly acquired and a lot of body pain then undx'd (fibro). In Oct. 91, I broke my leg, and as I hit the ground, I felt the rest of my entire gestalt break, too. I never recovered. It triggered a second onset, but I didn't know to call it than until much, much later.
You write about total absence of compassion from your sisters. I suffered only total misunderstanding, including from myself (I had no clue), and even from a multitude of doctors whom I knew through other means than being their patient. Everyone rationalized my illness, until their rationalizations made sense to me, too. Every medical professional with whom I had casual conversations about my symptoms (they were the physicians of family members whom I was a caregiver to) had some very good reason for each of my weird symptoms.
Except that THEY got to go about their business, and I was not able to. My daughter came home for a meeting/visit the following spring and noticed what I had become. She elicited a promise from me to seek a dx, before she left town again. I kept my promise and found out what it was, etc. etc. etc.
Ok, here's my point, Ann. Once I knew, and once I started reading, unlike most of my fellow pwc's I didn't see any need for the slightest apology about my illness. I was so assertive or self-convinced, or whatever, that I was believed; I went unchallenged. And yes, fair weather friends left the area. And yes, distant cousins and the like made stoopid, inappropriate, though well meaning comments. And, yes, there are people in my life who are simply not coachable.
And, yes. The flowers and get well cards ceased as soon as the period of "recovery" [not] from the leg surgery was supposed to be over. But the real friends hung on, and the new pwc friends (the best ever) whom I found as soon as dx'd DO send get well cards and make phone calls (as do I to them).
Nobody in my family wants to read OSLER'S either. It's a formidable size. But that doesn't mean they don't accept my illness as a given. Not everyone is motivated to handle all the information that we, as pwc's, soak up. Well, I didn't demand that my family read all the material that made me a degreed English major, for example. They were proud of me for doing all that, but it wasn't their cup of tea.
Some people are squeamish about reading a lot about CFIDS. Once my loved ones learned there is no known cause and no cure, and once they saw me the way I had become, they probably saw no point in making themselves even more depressed (their way of thinking, not mine) about MY (not their) illness. And, come to think of it, why would I want my loved ones to become as obsessed with (or to put it more nicely, as absorbed in) my illness as I am. Because I love them, I want them to live THEIR lives as fully as possible. I'll handle mine. Just don't tell me IAIMH [it's all in my head], and nobody does.
I'm beginning to learn that just because members of my healthy world are not motivated to become experts on CFIDS, that doesn't mean they don't care. My kids are involved with me a lot, though not in the information-seeking department. My husband lives with it everyday. He feels he doesn't need to read about it. He does everything imaginable for me in the way of doing those things for me that I can't or don't feel like doing for myself anymore. That's support.
Just a couple of examples. Every morning on his way to work, he takes to the Post Office whatever, I've gotten ready to be mailed, from letters to packages. I can no longer stand in line or carry anything in. Just about every evening, he brings take out dinner home. He knows I'm too fatigued to even open the refrigerator door by nightfall. He doesn't analyze it; he just does it. Sometimes, like tonight, it was too much trouble for me to sit at the table and eat the food. He didn't mind; just accepted.
I don't know if it's my internal attitude of conviction about how real this illness is. (I once had a professor who taught us that one should always know more about a subject than one is going to say, and I know a hell of a lot about CFIDS, though I only share most of it with inquiring pwc's.) I don't know why it is, but I have not had to take emotional abuse or physical abuse from anyone around me regarding my disease.
This may be pure-D luck, because I am aware of multitudes of pwc's all over the nation and beyond, who have suffered from the withdrawal of love or worse at the hands of people close to them. But just perhaps, just maybe, it's because psychologically, without much talking but with a whole lot of silent (or attitudinal) language, I have refused all along to give anyone permission to make me feel responsible for my illness, invalidated, or guilty/apologetic. Don't know.
But I do know that our own attitudes are the only thing in this difficult life that we have total control over. And when we convince ourselves that we are not responsible for CFIDS, that we have valid cause for our suffering, and that we accept the FACT of our illness, even if others don't jump on the bandwagon with us, it ceases to matter so much.
In any event, Ann, I care mightily about your situation and wish you all the best in surmounting your present difficulties. I pray that you, and all of us, will soon feel as good as can be under the circumstances.
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