To relatives, friends and the world at large
We with Fibromyalgia have to deal with a lot in our daily lives, but one of the hardest things of all, is being misunderstood and often dis-believed, by family, friends and the world at large. This article is addressed to you.
Most such “Letters to normals” are apologetic. I have no intention of apologizing. I will assume you are reading this, as you honestly do want to understand. Therefore, the blunt facts:
First off, learn about the condition:
Do not assume you really know a thing about it, if all you have heard are the short sound bites on TV, or read a few magazine articles. The fact of the matter is, if you do not have the disorder yourself, you have absolutely no way to really compare it to anything in your own life. So if someone you care for has FM, learn, read, understand, get serious about it. But most of all, listen to them as they are your best source of information.
When you ask us questions and we are trying to explain something, honestly listen to the answers. As we find, that there are two kinds of people, those who honestly listen and those who are just waiting for us to stop talking, so they can speak their own point of view.
Such people generally, haven’t heard a word the other party said, as they were too busy preparing their own statements in their head. We tend to stop trying to explain ourselves, as far too often, what we get is someone of the second sort, who only wants to discuss it, just so they can tell us to try some treatment or other, or worse, wants to hear a symptom list, just so they can try and trivialize them. So be the one who honestly listens.
Do not invalidate them:
By this I mean, do not assume for example, that your family member just needs to push themselves a little harder, or that you need to show them a little “tough love” and act for “their own good” and thereby force them back to health. You cannot force someone back to health, all you will do is drive a major wedge between yourself and your loved one.
Do not assume they are just being lazy, or faking it to get attention either and most certainly do not make disparaging comments to them. This all too common tactic is, quite frankly, the single most devastating thing you can do. As by doing so, you dismiss or invalidate not only their suffering, but them, as a person. For example:
“You look fine to me !” (Underlying message: “You don’t look sick, therefore you must be faking it.”)
“I get tired like that too.” (Underlying message: “So, what’s the big deal? Everybody gets tired.”)
“Have you tried (a suggested treatment)?” (Underlying message: “If you don’t take this remedy, it’s your own fault that you’re still sick.”)
“But you could do it before ! ” ( Underlying message, “If you could do it before, you can do it now. Your lying when you say you can’t” )
“My Aunt had X, and all you need to do is Y” ( Underlying message. “Other people deal with such things, youare just not trying hard enough” )
“If you ignore it, it will go away” ( Underlying message. ” The only reason you have a problem, is you pay too much attention to it”)
“It is just stress !” ( Underlying message. “Everybody has stress but doesn’t get sick over it, so you are weak and you can’t handle life” )
“It’s just a syndrome” ( Underlying message. ” It’s not a “disease”, so it’s not real “)
Do not Undermine them:
Undermining comments are generally sarcastic comments, that are disguised as humor, or as caring statements. That are neither, caring, or funny, they are just harmful.
For example: To say “Good morning lazy bones” said with a smile, to the person with FM, when they get up at noon, after they finally fell asleep at dawn. When called on it, the speaking party will invariably say, ‘I was just kidding’, which is a lie, as they were not joking. They are commenting on the fact the person with FM is getting up later than is considered socially acceptable, and are showing that they disapprove.
But, as it’s not socially acceptable to say that to someone whose ill, they make a “joke” instead. The same goes for similar sarcastic comments on housekeeping, our work status, most anything at all, where we fail to behave within expected norms, that are disguised as “humor.” Such comments increase pain, both physical and emotional. Not to mention, they are a major source of stress and hostility.
The fact of the matter is, “70% of all suicides have uncontrollable physical pain, as a contributing factor.” The suicide rate for those with FM is nine times the national average. So, adding emotional and mental stress to our lives, with such comments, is uncalled for and not any way productive or useful and … could very well cost a life. Consider well, before you speak.
Avoid saying, “You look so good! You must be feeling better !” even if you mean well, as this invalidates our illness and our suffering. From National Invisible Chronic Illness Awareness”
How we look, has nothing at all to do with how we feel. We learn to fake normal quite well thank you. We may have worked hard to pass for normal today, just to make things more comfortable, for you, with a ton of makeup and a determined smile. We may have taken pain killers before coming to the social event, so we can walk and move with some semblance of normality. Actions for which we will pay for in pain later. So don’t assume we have gotten better, unless WE tell you so.
Learn to deal with unpredictability:
FM is not predictable. What your loved one could do today, they might not be able to do tomorrow. Being able to stand for twenty minutes, does not translate, into being able to do it for a hour. And just because we were able to do something this morning, does not mean we will be able to repeat it tonight.
Plans might have to be altered or dropped entirely, often at the last moment, regardless of how well they seemed a few hours ago. This is not something that is under the persons control. You have to learn to be flexible and not take such disappointments, personally.
Do not try and give “advice”:
By this I mean, do not try and “fix” things or suggest cures. We need you to be what you are, our friends, our mates, our family… not pseudo doctors.
It is not that we don’t want to get better, but we have learned not to grasp at straws. Shoving the most recent article under our nose every time we turn around just says to us, that you expect us to “try” this. We likely will not, since it is A: not yet proven to work by any reasonable trials or B: has been tried ( either by ourselves or a significant number of others ) and it’s already known it does not work.
Understand, most of us are hard core researchers of the “news” as believe me, we want a way that works, even more than you do. But, hard experience has taught us, not to just try every new theory that comes down the pipe. The failure rate is high and often creates more problems, than the suggested treatment resolves. There is a world wide network of FMers and we do share information, lots of it. So if there is something that works ( or fails ), we tend to hear about it a lot sooner than you will. So if we tell you that X treatment doesn’t work for us, believe us.
The so called “Testimonials” from people who have been “cured” are generally sales pitches from snake oil salesmen, who just want to sell us a product and make money off of our pain. Such loathsome creatures come out of the woodwork, for almost any chronic illness. So please don’t bring these up. It is just an annoyance.
Changes in your relationships:
High energy, long duration things, might have to be swapped out for low energy, shorter duration events. Those of us with FM, just do not have the endurance for long walks, or going hiking, doing major bike rides, traveling, etc. If these things were the recreation of choice, you may have to learn some new ones to share with your loved one. This includes sexual activity, where new ways and means, may have to be learned.
Expect to carry a larger load of the physical tasks, such as housework, shopping, child care etc. This can be on occasion, or even permanently, dependent on how severe their FM is, as it varies from person to person and day by day.
Learn patience: There are a lot of adjustments that have to be made in learning to live with a chronic illness. This is very stressful, especially at first. Expect a certain amount of emotional upheaval, and sudden mood changes on your partners part.
Avoid comparisons: Meaning, do not bemoan what “used” to be, not to them and not to yourself. It is counter productive, as it will not help you learn to live with life, as it is now.
Expect financial changes: One of the major adjustments in our lives, is often our lack of being able to keep or maintain gainful employment. Therefore, the larger share of such burdens, will fall to other family members, mates, or the social system and often a combination of all three. No one knows better than ourselves, how hard this loss of independence can be.
We did not ask for this situation, our dreams and goals, as well as our ability to care for our own financial needs, has been undermined by something outside of our control. Adding guilt to this already painful mix, is not only counter productive, it is needlessly cruel, to us and to yourself.
The need to make assurances that your staying: The fear of abandonment, is very real. With good reason. Over 75% of marriages and other unions, dissolve as a result of a major injury or chronic illness, that was not present, in the start of the relationship. Given how often this event does indeed happen, abandonment is not an unreasonable fear, so you need to make assurances and make them often.
If you are the care giver, take care of yourself:
You cannot help them, if you are not in good shape yourself. It’s perfectly understandable and natural to feel “disappointed, impatient, guilty, frustrated, helpless, and cheated.” at times. Your own expectations of life, have been forced to undergo a change, as they have for your loved ones. Realize, that you might be called upon to make changes and sacrifices. But, in the process, take care of your own health. Manage the stress, with professional help if need be. Maintain your contacts, your social life, even if your loved one cannot always join you. “There’s a difference between caring and doing. Be open to technologies and ideas, that promote your loved one’s independence.”
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