Personally, I ignore the “it’s all in your head” chatter regarding fibromyalgia. In fact, I don’t even give that comment the time of day. Why bother with such nonsense?
It’s simple to brush off such rude and ignorant comments when they come from strangers. But that’s not always the case. What if insensitive and hurtful words are cast your way by those close to you?
What if your own family members are adding to your pain?
We know that fibromyalgia is not a figment of our imaginations. Who would WANT to create a life of pain and fatigue? Yet, many of us are told that our pain, fatigue, headaches, insomnia, etc. are symptoms created in our own minds.
In this article, we’ll explore a few reasons why this phenomenon persists. But first, we’ll take a look at the types of unhelpful comments some of you may have heard when you’ve shared your fibromyalgia diagnosis with others.
I’ve heard of fibromyalgia. Isn’t that the disease where people are just too touchy?
Isn’t fibromyalgia a made up thing?
Isn’t that the disease where everyone’s a complainer?
Isn’t that the same diagnosis as depression?
Isn’t that just for old people?
Fibromyalgia? I thought you were just lazy.
Did a doctor tell you that or did you just see it on TV?
Some comments are made under the disguise of at least sounding
I heard if you just exercised, fibromyalgia would go away.
I know a person who got rid of fibromyalgia by drinking a special berry juice.
You could get better if you really wanted to.
Here’s a comment I heard directly from someone I thought was a friend. I can still remember what it felt like to hear these words coming from her lips:
Oh, fibromyalgia? Seriously? You’re not buying into THAT, are you?
And, here’s what I heard from my first chiropractor:
Really? Don’t you think
everyone has aches and pains when they get up in the morning?
And, the comments that can fly within the fibromyalgia community are oftentimes no better.
Isn’t that what you’re diagnosed with when tests show that there’s nothing wrong with you?
Isn’t that the “wastebasket” diagnosis?
We all know that’s not “real.”
Some of these statements may have been made under the pretense of “support,” but let’s be honest. These comments are condescending. They’re insulting. They’re hurtful.
So, what can we do?
When we hear less-than-helpful comments, it’s common practice to categorize them. We typically defend the speakers (and their remarks) by trying to decide on what’s the intention behind the comment. Was the speaker uninformed, at least trying to be helpful, or intentionally insensitive?
I’d like to suggest that you instead put the focus on where it belongs. You see, it’s not about how or why the comment was made. It’s not even about who made the comment. The real issue here is how did the comment make you feel?
If the answer to that is anything less than feeling supported, then you have permission to disregard it. You get to ignore it, challenge it, walk away, or confront. It’s up to you
You get to decide what response (if any) is best.
Next, we need to address the very large elephant in the room.
IS fibromyalgia in our heads?
In this instance, we DO need to look at the intention behind the comment. When this statement is made, it’s not said out of support, compassion, understanding, or even from a place of scientific study. It comes from a place of judgment. What they’re really saying is that the diagnosis has no merit. By extension then, we have no merit either
This statement implies that the symptoms we experience are not real and would cease to exist if we were not somehow mentally impaired. It’s further embellished by the notion that fibromyalgia is an emotional problem.
Here’s one factor where I think that fallacy comes from. It is true that a significant number of those who deal with chronic illnesses like fibromyalgia have some sort of abuse history. Studies have shown a correlation between the frequency of a fibromyalgia diagnosis and a history of abuse in childhood.
This line of study, however, is very convoluted. It’s impossible to define, much less quantify, the wide-ranging topic of abuse.
Let’s look at the general population of women. One study
revealed that 1 in 5 women claim to be the victims of sexual violence. That number would undoubtedly increase if the study subjects were asked about other forms of mistreatment including emotional abuse.
A large portion of the female population bears the scars of either physical or emotional abuse (or both). Some may go on to develop fibromyalgia. But citing the abuse as THE cause of fibromyalgia is misleading. Tragically, it also perpetuates the myth that fibromyalgia is a psychological problem.
This is where the real danger lies.
Psychological and emotional concerns can contribute
to the symptoms of fibromyalgia, but they are not one in the same.
There's a wide array of experiences between physical and emotional abuse. Abuse can also leave a wide array of lingering effects on those in its wake. It’s common to validate the effects of physical abuse, yet minimize (or even dismiss) the effects of emotional abuse.
So, what constitutes emotional abuse?
That topic is far too deep and wide for the scope of this article, but I’d like you to consider one small aspect of it.
If you hear offensive or hurtful comments regarding your diagnosis from a family member or loved one, how does it affect you? What if you hear these comments all the time? At what point, does it - or could it - cross the line to be considered abusive?
While there’s no definitive answer to that question, I do want to get you thinking. Emotional abuse creates a constant stress to the body. Emotional concerns become physical concerns
. Stress is both emotional and physical.
Do any of these behaviors sound familiar? Do you –
Feel a generalized sense of being unsafe or insecure in your environment?
Frequently repeat conversations or arguments in your head trying to fix or resolve a problem?
Frequently feel isolated or alone?
Notice that your self-talk is often negative and harsh?
Feel that others wouldn’t understand your thoughts and concerns, so you keep them to yourself?
It’s one thing to feel that others in your immediate family don’t understand what it’s like to live with fibromyalgia. It’s another to feel invalidated, embarrassed, or even humiliated by their comments or actions. That’s when the line has been crossed.
Here are a few suggestions to help you find ways to meet your emotional needs.
When you’ve asked for support, have you been specific enough? Sometimes we feel that others should just “know” what we need and we forget to include specifics.
If you feel you’ve been specific, but you still don’t feel heard, consider broadening your family circle. Are there nearby relatives who could help? What about neighbors, co-workers, church members, or community group members? Asking for help can be difficult, but even getting one additional person on your support team would be worth it.
Have you expressed your feelings or concerns with qualified professionals such as therapists, clergy, or medical professionals?
Sharing your feelings in support groups can also be very helpful. Support groups can serve as a great resource for referrals.
And, here’s one last point that may surprise you. We all want to believe that others will change … especially our family members. However, if someone in your family has repeatedly shown himself or herself to be unsupportive, you have the right to stop waiting for this change! You can still hope for the best, but in the meantime, take the steps you need to stay safe and see that your personal needs are met.
Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community.
Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™- a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.
Would you like to find out more about the effects of STRESS on your body? Download Sue's free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.