Five on Friday: Bringing you 5 somethings each and every Friday
Here are some things I’ve learned from my experiences with “Fibromyalgia.”
- Fibromyalgia is NOT incurable. When I was diagnosed with it back in 2002, (at the age of 25) the specialist I saw at the University of Miami who had been doing extensive studies on it, didn’t have much good news for me. She said, “Make friends with Advil.” Um, hello? What kind of life is that? My mom and I looked at each other and knew that we would figure out some other way to heal myself from the pain my body was going through. Advil is great and all. But I wasn’t going to be taking that for the rest of my life. No way. And I DID figure it out. And I don’t have fibromyalgia anymore. Ta-da!!
- I’ve had a lot of anger. ALL of my Fibro-related body pain was as a result of my emotional state. Especially my anger. And the anger that I cared not to acknowledge because it was too crazy and scary and upsetting. And I hesitate to say anything hokey like “Getting in touch with my anger cured me,” but in some ways it did. And because it was so instrumental in curing me, that makes it awesome and not hokey at all. Anger is a powerful thing. And because my mind thought it woud be too scary to deal with the anger, it created physical body pain to distract me from the emotional issues.
- My body is trying to help me. When it acted up and was in incredible pain, it was really just trying to protect me from things it thought would be much more uncomfortable for me. Namely painful emotions. Don’t pay attention to those yucky emotions. Just pay attention to this pain in your body instead. (Distract, Distract. Pay no attention to that thing you want so badly that I’m hiding behind my back. Eat this lollipop instead.) Also, in case you haven’t noticed, it’s much more socially acceptable to say that you’re too sore and tired to go out and do something with your friends than it is to say, “Sorry, can’t do that because I’m a raging bitch underneath all of this and I don’t have control of my emotions.” So the body pain also made it easier for me to say No to things. Which brings me to the next thing…
- Body pain gave me an excuse. And at the time, I needed one. I didn’t grow up feeling confident in saying No to other people. Mostly I said yes to everything and I wound up sacrificing myself and my happiness. Sometimes in some pretty big ways. It got so bad (my inability to say no) that I actually wound up having sex with a guy I didn’t want to have sex with…and I was severely truamatized by it and soon after that’s when all my Fibromyalgia and Chronic Fatigue Syndrome symptoms started and then stuck around for several years. I did not feel safe saying no. My body collapsed with all the symptom to try to help me stay safe, stay indoors, stay away from people, and curl up in a corner and heal and take care of myself. Ultimate excuse: my body won’t let me.
- We are “meant” to be free and clear. It’s not okay to have chronic pain in the body. Yes, sometimes that’s “what is” so it’s okay in that sense, but it’s neither normal, nor natural to have chronic pain. When there’s chronic pain, something is OFF. Outside of structural abnormalities, there’s no reason for chronic pain. Especially the pain associated with Fibromyalgia. There’s nothing structural happening with that kind of pain. That means something else is causing it. I didn’t want to look at the mind/body connection for a whole year when I was first diagnosed. (Nothing wrong over here with my mind thank you very much!) But ultimately it was working with my mind and my emotions that healed me. That’s what did it. When you have things that hurt for long periods of time, it’s a signal that something is off. The body is trying to get back to its natural state of feeling good – and it needs our emotions to be on board with the plan.
I’m now a HUGE fan of emotional wellness. Understanding myself and what I’m feeling. Understanding the beliefs that lead me to feel certain things. Sometimes I feel bad, sometimes I feel angry, sometimes I feel weird or confused. But there’s no reason to stay that way chronically. Chronic anything is a huge wake up call for me now. It’s a wake up call to look at my inner world. My emotions. My feelings. To acknowledge and love them.
{ 15 comments… read them below or add one }
My wonderful friend,
Thank you for this and how you helped my beautiful mommy today. I love you so much.
xoxo
Allie Longoria
wewomenonline.com
Allie Longoria´s last blog ..Hello world!
@Allie You and your mom are amazing. I could tell that there’s so much love between you both. She’s taking such good care of herself and she’s so open and beautiful. I love that we got that time together this morning and I’m glad it served both of you. It also helped me feel good about contributing and helping someone else going through some similar stuff that I’ve been through. I haven’t talked about my Fibro experiences in a long time and it’s actually very empowering to do it now. So perfect in so many ways. Hugs and love!
Mona, what an awesome awesome post. Your awarenesses are mighty and powerful and kind. Those are the kinds of awarenesses I wish for every single one of my bodywork clients. It takes a whole lot of courage to go where you’ve gone. Thanks for showing how!
xoxo
heidi
@Heidi Yes! For your bodywork clients. Awesome. I’m with you on the courage thing too. Took me a while to open up to the mind/body connection, but once I got into it, it really was the thing that made the huge difference for me. It’s a beautiful thing.
Mona: Very interesting post. I’m so happy for you that your pain is relieved! I do agree that our emotional states often affect our levels of pain and more, how we perceive those levels.
I can’t say I agree with the assertion that “anger (or any so-called negative emotion) causes fibro.” The truth is we don’t know what causes fibro — but the sadder truth (sad because it complicates things so much) is that with so many of us, our stories are NOT the same. There are so few common links.
I’m glad you’re better, truly — but I’d hate for some skeptic to use this as more fodder for the hateful “It’s all in your head” B.S. we have to put up with on a daily basis!
Sherrie Sisk´s last blog ..A Summertime Meditation to Relieve Chronic Pain
Yes Yes Yes!! So good to read this! I am a shiatsu practitioner who works on women w/ fibro (and I’ve written about it) and have seen this evidence first hand.
I also got another confirmation of this from author, Lynn Serafinn (The Garden of the Soul) when I interviewed her. She, too, had fibro symptoms, in a big way, and had to make the leap of changing her life circumstances.
(Also see you’re reading “Radical Honesty”… read that too!)
@Sherrie – Thank you for visiting and celebrating in my pain-free-ness.
I apologize. I love you. Please forgive me. Thank you.
I totally hear you on the mean “It’s all in your head” thing. I heard that a lot in the beginning of my symptoms and hated it also. It’s a very unkind way to talk about emotional wellness and mind body issues. And especially unkind to say to someone who is sick and suffering and in incredible physical pain.
I think it’s sad (but fixable!) that in our society in general, talking about things going on in the head area (like the mind and brain) are taboo in many ways and judged as being reserved only for crazies and wackos.
I think it’s important to make looking at our inner words as comfortable and easy and as normal as possible. Brains, and thoughts, and emotions, and heads are just as wonderful as other parts of our bodies that require attention and love.
The idea of something being “in our head” has a gotten a really bad reputation. And the interesting thing about it is that *everything* is actually in our head – because that’s where thoughts happen. It doesn’t mean we’re crazy or weird or anything like that. Recognizing what our “head” does means we’re in tune with how things happen along with the mind and body being connected. It’s an honest, mature, way of relating to things from my perspective.
If someone were to use my post as fodder for the mean way of seeing that it’s all in our head…I can’t prevent that. So I’m okay with putting out my experience boldly and openly and making sure that this perspective and information is available to anyone who is ready to receive it and find it helpful.
I remember at a certain time during my healing journey I wouldn’t have been open, receptive, or interested in what I wrote in this post at all. It just wasn’t where I’m at.
But for the people who are in the place to hear this stuff and it starts connecting some of the missing dots for them in their situation, that’s what it’s all about. We all get what we need in the form that we need it.
Wishing you all the best as you take care of yourself…
@Gina Would love to read your writings about experience with working with Fibro women. Do you have a blog also? Keep on doing your awesome work. Sounds like you’re doing a cool job of keeping yourself clear and ready to be there for your clients too. Radical Honesty is deep stuff! I’m learning a lot about myself. Maybe will do some review of it here on the blog one of these days. Love ya!
Love this post Mona ~ you are amazing!
Marianne Wille´s last blog ..White Sand in the Mediterranean
@Marianne Thank you, Hunny. I love you and your amazing mommy-ness. I hope I’m as awesome a mommy as you one day.
Above you said “The idea of something being “in our head” has a gotten a really bad reputation. And the interesting thing about it is that *everything* is actually in our head – because that’s where thoughts happen.”
That’s nice, but we’re talking about fibromyalgia and fibromyalgia is not caused by thoughts. It is a neurological condition that cannot be cured. Some people experience prolonged remissions, but there is no cure.
Referring to cures and talking about thoughts as a cause for fibromyalgia does nothing but spread lies and misinformation to a public that is already ignorant and misled enough about this disease.
@Jen. Thank you. I can tell that it’s important to you that the proper information be “out there” related to Fibromyalgia. It’s important to me – and that’s why I’m sharing this. Because it was so helpful along my path.
When I was first diagnosed, I went to the forums hoping to find ideas for healing. What I mostly found was a bunch of women bitching and complaining about their symptoms. Feeling helpless. Resigned to living their lives with these awful symptoms.
As a late-20 something girl reading these things…I was scared! Reading of women who hadn’t found relief in 15+ years!? Are you kidding me? It was scary and I couldn’t hang out in those forums because it was depressing and limiting. And quite frankly, very sad to watch how so many women were rolling over and succumbing to a life of pain. I wasn’t willing to accept that lifestyle for myself.
Since I’m on the other side of that pain now and have been for over 2 years now, I can’t in good conscience keep this information that helped me to myself.
There’s a certain point in my healing journey when I would have found it refreshing to see someone talking about the things that I’m sharing here. Not at all times during my path (because for a while I was very resistant to this kind of talk) but at a certain point, I needed a NEW idea of how I could approach my condition.
That’s the intent with which I share this information. There are women and men with Fibro out there who are searching for new perspectives to their symptoms and they aren’t satisfied with the current level of options and information out there.
I understand that having the public understand the condition appropriately is important. And I’m not willing to sacrifice the potential help someone could get from this information because I’m worried about how the public might perceive it.
As we both know, Fibromyalgia is a painful, debilitating condition and I wouldn’t wish the experience on my worst enemy. We’re both doing our part to help those who are suffering and I want to thank you for the work you’re doing toward that. It makes a difference and I’m sure you’re helping lots of people who need to hear the message you’re bringing to the world also.
I thought I would drop back in because I am enjoying the conversation. I hear you Mona about your needing a new idea of how you could approach your condition.
When I was pregnant 25 years ago I wanted to know what other women had experienced in childbirth and I got really scared when they told me their horror stories of long painful labors, drugs, stretch marks, and sore bleeding nipples. I only had one brave women share with me that her experience was like making love and even orgasm! Boy Howdy! I wanted Ann Hasting’s experience! I studied Everything I could find about natural childbirth, Lamaze breathing, yoga, and long forgotten practices to toughen up nipples for breastfeeding.
Labor and delivery was a transcendent and lovely experience for me also and I’m very grateful for Ann. Ann was a shining light of hope, just like you are for me.
Marianne Wille´s last blog ..White Sand in the Mediterranean
Ditto to dropping back in to make one more comment.
I think hearing others’ experiences, especially if they depart from the majority, is SO important, if for no other reason than to give us a sense that there are other possibilities. Gives us something to hold onto and even expand on and explore.
@Marianne – That’s a great analogy with the pregnancy stuff. We can either listen to the people who are freaking out, scared, and have had awful experiences. Or we can seek out the people who have achieved whatever it is we’re going through with some clarity and pleasure and maybe even orgasms! So glad you found what you were looking for and had a great birthing experience. I’d want the same for sure.
@Gina – Yeah, being educated on everything that’s out there is one of the awesome things about the internet. We can learn about so many options and then pick the one that resonates best for us in our situation. Thanks for doing the work you’re doing around this healing topic too.
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