Thursday, March 26, 2009

A Message To People WITHOUT Fibromyalgia or Chronic Pain Illnesses

Hello Everyone,

First let me tell you how much I appreciate you every single day. You are more important and vital than you realize and YOU MATTER!

Now, a message to those who do NOT live with Fibromyalgia or other chronic pain illnesses:

I HAVE to talk with you today before one more second goes by...

Listen, I got a message from one of my friends today and it was so blaring, so blistering, and so angry and it stung me to the core. It also filled me with deeper compassion and depth of love for my friend because they absolutely 100% do NOT understand the ravages of Fibro and chronic pain and it is hurting them SO badly inside.

I'm going to talk with you as plainly and as bluntly as I can today because you HAVE to know this if you are going to commit to loving someone with Fibro or chronic pain. Whether you are a friend, a boss, a loved one, a significant other, a parent, a spouse, a child.... no matter who you are, YOU HAVE TO KNOW THIS before one more day goes by.

There is NO way that your PWF (Person With Fibromyalgia) or chronic pain illness can predict when or how long a flare is going to happen. There is NO predictability, NO control, NO reason or rhyme to this "syndrome". It has it's own power and it's own agenda and EVERY PERSON IS DIFFERENT who has it. Some of us can function at 3/4 capacity, some at 1/2 capacity, some at almost zero. Some of us have days when we're almost 100% functional and then the next day we can be virtually incapacitated in the snap of a finger. Some of us can be out with you, having a good time, everything is going well, and WHAM!!!!! fibro pain will hit us like a freight train out of no where and it's all over.

**Husbands and Wives - Some of us can be in the middle of intimacy with our lover and everything is wonderful and sexy. Then in the blink of an eye fibro pain will absolutely grab control of our body and the pain can stop us dead still right in the middle of things. It's humiliating, it's embarrassing, it's horrifying, it's maddening! You feel like you are "broken" or "dysfunctional". Some of us wonder if our lover will stay with us or wander outside of the marriage for fulfillment. Some of us live with that fear EVERY day. Then there's the pressure of reassuring our spouse that it's NOT THEM and that we love them with every fiber of our being. We WANT them sexually, emotionally, spiritually, physically, every way possible, but we just CAN'T perform right at that moment. It's excruciating to have that let down and know we have NO control over the fact that it happened. For a PWF, their sexual identity can be destroyed because they can feel like they're not attractive any longer or "hot" to their lover any more. It can be very dangerous to a marriage if you both don't deal with Fibro in the most basic of terms and find a way through it. It may mean re-scheduling intimacy for another time, it may mean only one of you gets to have a physical release at that moment and the other gets to have theirs later when you both can be together again. But let me say this: ALWAYS, ALWAYS, ALWAYS, MAKE THAT DATE FOR LATER AND KEEP IT. Don't let it pass, don't keep your lover waiting. For goodness sake dont' stop flirting communicating with your PWF that you want them, are attracted to them, that they still turn you on. Reassure them that you're in this together and that your physical relationship is precious to you.

PWF's when you feel better, go to your spouse and MAKE time to get together with them. They need YOU as much as you need them. Guard your marriage bed with ferocious tenacity and DON'T let Fibromyalgia steal your physical relationship away from you. This syndrome doesn't deserve that kind of sacrifice. Are you hearing me? FIGHT FOR YOUR QUALITY OF LIFE!

Many of us that are PWF's hide our symptoms as much as we can. We fake our way through in order to sustain some type of semblance of our relationships. We grit our teeth and bear it and when we are alone, we pay for it with worse pain both physically and emotionally. The loneliness can be a silent prison for us that not one other person ever sees.

If you love someone with fibro, I want you think very hard about what I just wrote in that last paragraph.

I want you to make a commitment to remember it and be aware of it. I want you to create a safe haven for your PWF or person living with chronic pain where they can be honest with you when they are in pain and not have to suffer it alone. That is a huge way that you can help your PWF or person living with chronic pain to fight. You can be a hero today if you choose to be. The more a PWF or person with chronic pain can relax and be free to manage their symptoms without having to hide, the LESS PAIN they will have and the less length of time they will feel that pain. It helps the muscles to remain as relaxed as possible in their body.

What you have to know is that there will be flares that last days, sometimes weeks, maybe even longer. It won't be all of the time, but for some of us that happens frequently and for some of us it is the "luck of the draw" that day. Again, there is NO control over it.

Almost every single PWF I've met is a tough fighter and not willing to lay down and just allow fibro to consume them and give up. Let me tell you,.... we are some of the toughest and most tenacious people out there. It takes a great deal of strength mentally and physically (and for a lot of us, spiritually) to manage fibro on a day to day basis. Here's the truth actually: Fibro isn't day to day, it's minute to minute. We live one minute at a time and that's the cold hard fact.

If you are going to choose to love a PWF and be active in their life then you have to be willing to commit to that truth and roll with it. No condemnation, no blaming, no suspicious wondering that they're "faking", no pressure to "get over it". You wouldn't do that with someone living in a wheelchair, or living with cancer, or living without a limb (I'm just using some examples), don't do it to your PWF. Just because you can't see their pain doesn't mean it's not real or any less difficult to manage than any other devastating illness or situation. IT'S THAT REAL.

This is exactly why we absolutely need more research, more funding, more exposure to fibro in the media, in the medical community, and in society. This little whopper affects MILLIONS of us every day and it is devastating in many ways. It is no less important that any other cause or sickness out there. It is silent, it is invisible, it is dramatic, and it is costing us millions of dollars a year to manage it.

**Employers - If you have an employee living with Fibromyalgia I URGE you to please find out information and learn all you can about it. If they are a good worker and you want to keep them around, then make the investment in them. Find ways to help them be more comfortable at work or more able to manage their symptoms. Rally around them and give them support. I doubt very seriously that you will be sorry. If anything, when the PWF is feeling better they'll work harder than any other employee you have in order to make up for the down time they may need once in a while if they know you have their back. Most all of us are driven, responsible, hard working people who just need a chance to keep going and keep being a productive member of society.

We don't want pity, or sorrow. We want you to be informed, be active in helping us manage our symptoms, be willing to listen, be willing to stick it out with us through thick and thin and fight by our side. We want our dignity. If we want to be private in our pain because it's ugly or embarrassing that day, just let us have that privacy. Maybe we won't wash our hair that day or get a shower or even brush our teeth. Sometimes it's that way and we just don't want you to see us like that. It's ok. It's not going to bring the world down. It's just a little "break" and then when we're feeling better we will let you see us again. Sometimes we just need to be private in order to have some dignity. Especially if we are married PWF's! Treat us like you would if we were in a terrible accident and you had to make adjustments in order to help us through it. Don't get angry, EXCEPT at the illness itself.

PWF's or people in chronic pain didn't ask for this, they didn't do anything to "catch" it, they didn't go out and decide one day to become this way. It happened. That's it.

If you love us, let us love you back. Let us love you in the best way we can. We can't go back to being the same person we were before Fibro unless it leaves our body. Wishing for it or trying to force it, isn't going to change that.

Let us help you help us. Let us be free in the moments when we are relatively pain free. Let us experience the relief and fun and plain enjoyment of the moment as much as we can, let us try and exert ourselves and give it all that we've got in that moment. Then when the pain comes, allow us to deal with it until it subsides.

Be our hero.


Do we matter enough to you for you to learn as much as you can? Read as much as you can? Get involved as much as you can? Roll with the punches as much as you can? Take advantage of every pain free moment with us as much as you can?

Look at your PWF or person living with chronic pain today. Take a good look. The person you knew before this hit, is the same person trying to fight it. You can let them fight alone, or you can take up the sword and fight with them. Trust me, you won't be sorry. Your relationship will take on a whole new level of strength and determination and bonding than you realize. You may just find a person you didn't realize was there, and you might find out that you admire them very much. You might find a different you.

With much respect,


Ken said...

Good morning Sherri,

I visit your website propw/fribro every now and again. I glanced through what you posted yesterday, I think. Longest post on there. It touched me so deeply.

I am writing you today because although I do not have fibro myself, I know what you write of and must thank you for posting that. Not just for those that have it but those that live with it anyway.

My ex, who is today my dearest and best friend has lived with this evil pain for many years. I love her with just about everything I am and hope and wish there comes a solution for all of you! While reading that post, I dropped many tears for you both and those that you spoke of that have to live with the pain of a loved one.

Sherri said...

Dear Ken,

Thank you for your feedback! It's very important and you are welcome to post anytime.

It helps everyone. It helps us to learn what it's like from a non-fibro person too. If we learn what you suffer along with us, we learn how to support you and keep communication open.

For instance, what you wrote here about your ex. It's valuable insite and information and could help another guy who's in the same boat trying to help his lady too.

Bless you, bless you, bless you,

Cinda Crawford said...

Dear Sherri, I thank you for pouring your heart out onto this page. It's evident that you know what you're talking about. So many people do not understand where a Fibro person is coming from or the degree of pain & dysfunction that we/they live with. Keep up the good work & keep posting, gal. You're doing a wonderful job!

Cinda Crawford, host of the Health Matters Show at

Sherri said...

Cinda, thank you so much for your comment! I was so encouraged by it due to the fact that you are a leader and mentor in the Fibromyalgia Community. I am deeply grateful that you took the time to visit my blog and comment on it.