Dedicated to those WITHOUT Fibro…

 

 

This blog is dedicated to those without Fibromyalgia. 

By now (if you have a friend or family member who suffers from this condition) you’ve probably been given the run-down of symptoms, medications, treatment options, etc.  I understand you’re probably still confused.  Confused on how to help.  Confused with what to say.  Just plain confused on how to support someone with Fibromyalgia. 

While this is just my personal experience, I want to share the type of support I have received that has really helped.  Unfortunately, to explain what has worked, I also have to describe what has not.  It is not my intention to point out any friends or family members that may have accidently supported me “in the wrong way.”  The most important part is that you’re trying and I love you all dearly for it (I mean that with all my heart and soul), but the biggest frustration with Fibromyalgia is lack of understanding so I have to look at the bad AND the good to hopefully bring a little understanding to the surface.

So here is my suggestion list of ways to support (in no particular order of importance).

  • Believe Fibro is real.  Fibro sufferers really take a mental hit with comments from people that do not believe it is real.  The following is a list of comments made by some of those individuals (warning…they may sting a little).

“Fibromyalgia and chronic fatigue syndrome are probably the most common complaints that I see from people who are mostly unhappy in their lives or their jobs. It is usually the same demographic, and same economical class of patients. Most are usually women that have some underlying depression issues, and the few men that I have encountered have been nothing more than drug seekers”

“I believe that there is some truth in the disease and that some people do honestly have it, but I also believe it is a disease that is easy to fake in order to gain some sympathy from others or just to plain old steal money from the employer so that you can get receive a paycheck without putting any work in to earning it.”

“So, is Fibro contagious? Because two of the “sufferers” have friends that also have it, is it more likely that birds of a slacker feather sit and loaf together?”

“I wish doctors and pharmaceutical companies would be straight with the public and not cater to these unhappy women.”

“When a new patient lists FM on their interview sheet, you know you have an emotional whiner that’s unlikely to respond to any treatment. That’s a little doctor secret; they tip their hand.”

“Give it a rest already people and stop blaming your FAILURES on imaginary diseases”

“Its bitchy woman syndrome.”

  • Number two way to support, you ask?  Beat up anyone who makes any of the hideous comments listed above!

 

  • Understand that we need to set our own limits.  This is probably primarily for husbands and wives (or possibly parents of a child with Fibro).  I love my dear husband, but he (as husbands do) worries.  I think there are a lot of days when he thinks I should slow down.  There have been many arguments on whether or not I need a nap.  Basically, if he could wrap me in bubble wrap and keep an eye on me all day long, he’d relax a little easier, but he knows that is never going to happen. 

Telling someone they shouldn’t do something, or telling them you don’t think they can will only keep that person from trying.  Only the person with Fibro can try to push their condition and find their limits.  And as I’ve been finding out lately, those limits may change.  From my personal experience, someone’s worry tends to rub off on me as self doubt on whether or not I should be doing something.   

  • Don’t’ be offended if simple questions make someone with Fibro angry or frustrated.  A simple “How do you feel today?” is a very confusing question to someone with Fibro.  How do I feel?  “Well…let me think.  I guess I woke up with some back pain, but that got better until I got a headache, but I’ve been in a good mood despite not sleeping…”  It’s a complicated day with Fibro and a simple question is sometimes hard to answer with a simple answer.  This turns into my typical answer of “fine.”  In my experience, I appreciate that you asked, but don’t be surprised if I look confused for a few minutes after you ask while my brain runs through my day. Stick with simple…”Hey Jen…What’s up?”

 

  • Please be patient with my fibro fog.  Please?  I have been in multiple situations where the words just don’t seem to be coming out.  I’ve lost a word, or I’ve lost my train of thought and someone will disregard what I was going to say and they will continue the conversation as if I never even started the stupid sentence in the first place.  Not only is it embarrassing, but the interruption can make me feel like what I had to say wasn’t important enough to wait for me to find the word.

Please also be patient if I forget our plans, or if I forget your phone number even though I’ve dialed it a thousand times, or if I forget your birthday, if I ask you (what seems like) a stupid question, so on and so forth.

  • Please be patient with the side effects of Fibro.

Let’s start with irritable bowel and irritable bladder.  This can make road trips, movies and road trips tricky.  This is an embarrassing side effect of Fibro but sometimes there is little we can do to prevent it. 

Fatigue.  I may be doing ok and then, BAM, out of nowhere, my energy is drained.  I may not be able to stay out as late or do as much.  I’m not leaving early because I’m not having fun.  Fatigue may also lead to me dropping plans at the last minute.  Also…please be open here…this can lead to some serious moodiness. 

Depression and anxiety.  More than likely, this depression will pass, just give it time.  Be an open ear to talk through the depression.  Laughter is the best medicine.  Sometimes it may take a few days or a few weeks to get passed this depression but stick with us and don’t give up on us.  Be persistent and not distant with your support.  My husband says this is the hardest side effect to help me with, and I’m sure he’s not alone.

Anxiety (for me) has a tendency to come with feelings that people are upset with me, or that I’m failing at work or in other activities.  Please understand that if I ask if you’re mad at me or if I tell you I feel like I’m failing, I’m probably having a bad spout of anxiety.  My councilor has told me to be more open with people and reassure myself that I haven’t done anything to upset someone.  Try not to feel “attacked” or “wonder what you did wrong” if I ask you questions about our relationship. 

Physical limitations.  Find an activity that works for both you and your fibro friend.  Even if you’re not sure I can handle the activity, invite me anyway.  I may surprise you and be able to do the activity with no problems, or I may fail miserably, but at the end of it, I’m sure I would be happy just to be invited.

 

  • Don’t pity.

This one is SO hard.  By all means I think me, and other fibro sufferers appreciate the sympathy but we don’t want people feeling bad for us.  We don’t want people to worry and we don’t want to feel or seem weak.  This one seems to be the hardest for people to accept.  I just want to feel “normal” and not the friend or family member people worry about.  If someone has had fibro for awhile, they have probably been through the grieving process of losing their “old” self.  It’s a VERY difficult process and once that time has passed, it should stay in the past.  I know it’s heartbreaking to see loved-ones in pain or struggling but do your best to support and not grieve for the person.

  • Listen

Get ready.  Some days it may be depression.  Some days it may be anger.  Some days, sadness.  Some days, confusion and frustration.  We aren’t looking for you to “fix” us (you hear that hubby?); we may just need to vent.  Again, this is hard.  You may not fully understand, but just being able to vent is much appreciated.  

 

“In the sick room, ten cents’ worth of human understanding equals ten dollars’ worth of medical science.”
Martin H. Fischer

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2 Comments (+add yours?)

  1. Tammy
    Jul 19, 2012 @ 00:46:31

    Great job 🙂

    Reply

  2. Jenn Rojas
    Jul 19, 2012 @ 18:56:25

    Once again my friend, fibro sistah, and distant “double” you have caputured all of the thoughts in my brain…especially on a day like today when so much of this is true for me!
    One love ♥ , Jen!

    Reply

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