The worst things people could say

Yes, I ran out of spoons years ago. ‹(*¿*)› The principle of it works the same.

K9 said...
Wow - the most unlucky thing is that it seems like people are saying ignorant things to you folks. I'm the minister of a 300-member church and neither my spouse, family, nor anyone at work has ever said anything negative to me. When they hear what it is most people say "oh no!" And everyone wishes me well and prays for me.

Not about bragging or anything...just saying that whoever is saying the negative/ignorant things is not necessarily all that common - and they really need to be set right. Or for some reason, family members can't handle you being sick and are in denial.

K9, you are very blessed!

I would say that extended family can hurt you worse than friends, but spiritual abuse was the worse for my husband and myself! We lost our church family. We were worker bees. (I played the piano, he was a deacon, we taught SS class to the teens, children's church and even the Wedn night group.) When my pain got so bad that I had to give up playing the piano and then when I got really sick and was out of church for a month with mono, my first night back, I was told when I was set up to clean the church. ;/ "Well, you don't look sick"

Having a pastor ask you if you have sin in your life that you need to get right so you can get well is not a good feeling. When the 'prayers' didnt' work. (Hey, I know they helped, but they did not cure me) We were sort of just dropped.

My daughter's in-laws think we are useless parasites and were heard to have said "they must have some sort of generational sin in their background.' (Nevermind that we were all well until my husband came back from the Gulf and we think it is related to his service there as to the onset of our troubles.)

The one part that I feel unlucky about is that abuse and how it has jaded me so that I do not trust people. I am really working on that one.

I guess my want in all of this is to let people know that 'yes, I do have enough faith and no, I do not harbor some great sin in my life'. I know God can and does heal, but He also has said in other passages that sometimes a condition is for a further work to be done at another time. That 'time' could be now or in the hereafter.


I do thank the Lord that I don't have MS (we tested), I don't have cancer or some other worse disease. (I do wish my husband who also has fibro would not try to 'one up on the pain levels') Most days I am ok and skip the pain pills, but if I am snippy, please give me the benefit of the doubt that I am not trying to be mean, I am just in pain and trying to cope with that to the fullest of my ability at the moment.

Fibro is so misunderstood still. People hear it and go "there" with the eye rolling and nod. Like you I feel like I must explain myself when having a bad fibro day to my boss.The understanding is limited and usually met with some remark about exercise. Yes I'm overweight which doesn't help peoples ideas about what's wrong with me-if I could drop a few pounds I'd feel so much better!! Uh-hu, I've droped and gained weight since my diagnosis and it didn't make a difference in my symptoms! I'm hoping our voices can be heard loud and clear!! One thing that has helped was to send the Fibromyalgia pamhlet to friends and family who really care about me-I think Ill grab one for my boss at my next appointment.

wow you guys seem to know everything that anyone has every said to me and all the things I have gone through. I am only 38 years old I was diagnosed with FM about 2-3 years ago but believe I have had it much longer than that but I also have rheumatoid arthritis so the dr's were missing the symptoms. Anyway it is nice to know I am not the only one that goes through trying to explain myself to people all the time I wish I could learn to stop trying but like someone else said people look at you and say you don't look sick...

Paula

fibromyalgia, rheumatoid arthritis, meningioma, GERD, chronic ulcerative colitis

I too am not lucky to have Fibro, but I do feel fortunate enough to have found this wonderful website!

How lucky are we to have such a knowledgable and caring support group. This is where I know I can express my pain and daily struggles without worrying that someone will twist my words and put me down. This is where we Foggers can reach out to one another and feel useful, needed and cared about.

This website is my shelter from the pain!

Violet, I like what you said, "I usually smile.....and say that I would trade places for about 5 minutes with you....it won't take any longer than that for you to be less judgemental." If I wasn't a recluse ( not by choice) I would use the saying to slam whoever says that I don't look like I'm in pain.

Peggy, do you go to a Pain Management (PM) doctor? I had a work related spinal cord and neck injury a year and a half ago. The pain was so bad and I was taking too much pain meds. I have a wonderful and supportive PM doctor who trusts me and knows my ultimate goal is to get rid of the oral narcotics.

What bothers me the most is when people who are not in pain and know I am on pain killers always without fail beg me for some of my meds. They tell me I am lucky to be ale to have a 'legal high'. Huh? First, no I would never give my meds to someone else. Second, we who suffer from pain and take the pain meds as prescribed do not get a sense of being 'high'. What we hope to achieve is alleviation of our pain!

Besides, the side effects from being on oral pain meds is the worst. My colon is all but dead and I have beyond chronic constipation...impacted bowels! I decided to search for an alternative to the oral pain meds and discovered the option of having an Intrathecal drug pump implant. The idea is that the drug is delivered directly to the brain, bypassing the oral passage ways, which dilutes the potency of the drugs. In this way the narcotic dosage is cut from 100% to 1%, but the outcome is equal to the larger oral doses.

I had my drug pump implanted last November and it takes a while before the correct level of dosage and strength is found. I am still in pain and take oral pain meds for BT pain and I have started to finally find significant relief, but without all the awful side effects.

Unfortunately my colon has not recovered yet and I continue to have terrible bowel movements, or should I say the lack thereof! If anyone is interested, do a search for Intrathecal drug pump on this website and you will see where I have posted my experiences with both the required trial period and the implant itself.

Best Intentions always,

Charles

I so relate to most of your comments. After listening to years of abusive comments from my FIL - a man who mocked my walking bent over, limping and made snide comments with a smile to me about being a "Big Girl" now (weight put on since being diagnosed with Fibro), or looked at me disbelievingly, smiling, saying, 'hey! maybe I have the same thing as you!' and started complaining about all his aches and pains - I have finally, Finally, come to understand that, this is not about me. It is about him and his issues and his limitations, his inability to be compassionate toward another person, his ignorance, his lack of sensitivity, and his lack of understanding.

My mother, who has more energy and is in amazingly good health at age 86 (thanks be to God!) still doesn't understand why I just can't be as active and involved in the community as I once was, can't comprehend that simple everyday chores like laundry and dusting can be debilitating, and gives me all kinds of well-meaning advice like, "eat more fruit and vegetables, I do, and look at me - I'm healthy" and then launches into a full-blown monologue about how proper nutrition will cure me.

I've heard from various people, "so how ARE you? oh really? you LOOK great, what's with the cane? are you STILL using it? isn't your doctor doing anything for you? You really should try ... (everything from natural herb concoctions, special teas, vitamins, flaxseed oil, go organic, you fill in the blank here I've heard it all)." And, "such and such helped me, I used to have pain all over too and now it's gone". Wow. Amazing. What a miracle.

I've had a slightly similar experience to what Mrsppmrxky went thru, when two people approached me and said "You need to believe! You need to have faith that you will be cured, and Jesus will cure you!" implying that I don't believe "enough" and don't have "enough" faith.
Please understand: that kind of mindset is spiritually and psychologically abusive and horribly misplaced within any solid theological framework. One of my theology profs, an elderly fellow who had been around the block a few times, used to tell us, "The church is not an elite club of saints, but sinners! We are all carrying our crosses and some are heavier than others." If your church community sees itself as "an elite club of saints" and is abusing you, please, please, find a healthier one! It is just plain wrong to be "committed" to any abusive faith community that has the potential to cause serious spiritual damage.

My personal journey thru these kinds of abusive comments involved changing how I think. We can only change ourselves, yes? Once I was able to change my perspective and the core belief that I had that this was a purposeful wound my mom, FIL and others were trying to inflict on me, I began to see things differently.

Changing how I think about those very hurtful comments, helped me to dissolve the expectation I had that family members "should understand and be more compassionate". Why "should" they?? They are not in the same place of being emotionally, psychologically, spiritually or physically, nor do they have any clue what it's like to experience Fibromyalgia. The only way they would be able to understand and have more compassion, is if they were inflicted with the disease themselves - and I wouldn't wish it on anyone!

After a long time of feeling miserable and resentful at these kinds of comments - sometimes they would bring me to tears - I slowly came to realize that having that reaction and carrying those feelings were only making things more emotionally painful and difficult for ME. My FIL and insensitive others couldn't care less, but I was bleeding on the inside, fueling the wound every time I thought about it. The more I internalized those hurtful words, the greater the emotional turmoil I found myself in and the stronger the Fibromyalgia attacks seemed.

While I'm still a work in progress as we all are, now at least I understand that not everyone is capable of the kind of compassion, empathy and understanding that comes after "walking a mile in my shoes" and that those people probably could use more of mine. I'm still working on the (very difficult!) process of "forgiveness", and find that my resentment toward the FIL and others like him, is becoming significantly less. I no longer react with comments that are laced with angry tears and strong feelings, though at times the memory of his words do still sting. I am human after all. Sighhhh ... it's a journey ... and no less difficult just because I used to minister as a hospital chaplain.
I do apologize if this has come across as a preachy rant ... I have no excuse ... :(