Well meaning advice...from family...funny...But not!

[blazes]

I read Spitfire's post about not being able to tolerate chatter, being unable to handle others in her life that are unwilling to accept her illness. We've all had that in our lives. We all know what it feels like...well, it basically feels like CRAP!

My sister came over the other day. She's been trying to get me out of the house. Looking stuff up on the internet. Telling me I just need a job. She had a friend that came down with CFS years ago, after his wife died and left him with a young son. She said he "just disappeared into his home for several years." She would go to visit but he would basically stop her at the door and he looked very bad (sick). He had moved his bed in the living room so he could at least spend some time with his young son while he laid in bed.

She called him one day for me, several months ago. Thinking he would give me some great news on how to get over CFS. How to get it "out of my system" so to speak. He basically told her: "She needs to just push through it. When she's tired, she just needs to go 10 more steps. Drink lots of water. Eat lots of organic food. Eventually she'll get over it."

In her wish to help me, and I know it wasn't to hurt my feelings or to make me feel like I was deliberately trying to drag this thing out, she made me feel like I should stay away from her because she feels like I'm a big FAKER!

I talked to my doctor about this and the big joke between us now when I leave the office is "Make sure you drink lots of water and when you come back, I'm sure you'll be cured."

I can laugh about it now but it truly hurt my feelings then. People don't realize what they say. It usually is well meaning, I assume (but you know what they say about "assuming").

Well, I'm babbling now. What I'm trying to say is that unfortunately, those that are closest to us can hurt us the most. You don't have to be sick for that to happen. They may not understand our illness but it doesn't mean they don't love us.

Take from them the love that they can give. Take the POSITIVE and leave the negative at the door. Don't accept it. I know it's harder than it sounds but its a learning tool. Its a "skill" (for lack of a better word) that we all need to learn for our own health and our own sanity. It's a process that doesn't come naturally for a lot of us...you're always having to keep that thought in the back of your mind....positive energy is so much better for us.

Be Well
Kimberly

 

[serenity]

we've all heard all of it. recently an aunt told me if i joined her friend's pyramid scheme id be cured. of course i have a friend of a friend that was cured by " insert whatever crazy cure here " ... & they all swear it, acupunture, little stickers you put on the painful area that plays a movie??? whatever, i've heard it all. makes me nuts.
i just need vitamins, i just don't handle pain well, people with my disease are full of sh*t, i've heard it all.

 

[jewel]

I especially love the "little stickers placed on painful area that plays a movie." Who doesn't love stickers, and if they don't work, well, try Disney character bandaids.

Honestly, I remember at a point of frantically trying a variety of different non-traditional/alternative approaches having , in the same week, been told by one "practitioner" that I had lost my feminine side, and that the symptoms were related to that. I carried myself in too masculine a way (?), and this was reflected in an aura she could see from my right side (e.g., feminine side) or some such nonsense. Then, the other provider (a chiro) telling me the next day that he found people with my type of symptoms improved when they asserted themselves and that he felt I was too passive or docile or something to that effect. A few weeks prior to that a massage therapist had told me that "I didn't want to "let go" of my pain." So, the synergism of their comments led me to the mantra of "I will not spend good money after bad. I will be more discerning. I will not spend good money after bad..." Of course, I would not have even been trying these people/approaches, all well recommended by someone or other who was trying to help, if the medical profession had had something to offer me.

And, it is even more hurtful when these statements come from family and friends... which is why I no longer discuss my health with anyone, save here. (Even docs do not get a full report at this point. I just see them if I have something acute or for the "preventive" screenings. Of course, if I do get in to a reputable CFS doc, that would be different.)

 

[gracenote]

I can laugh about it now but it truly hurt my feelings then. People don't realize what they say. It usually is well meaning, I assume (but you know what they say about "assuming").

Maybe we can assume that there wasn't an intent to hurt, but people (us included), don't do well with chronic; it makes us uncomfortable. We want to fix it, make it go away. I think often our friends feel helpless and this helplessness leads them to try to make us help them feel less helpless . . . by whatever means is at their disposal!

I would say it's less "well" meaning and more "fear" meaning, "discomfort" meaning. We can learn to have compassion for them and how we impact them, AFTER we take care of their impact on ourselves. Us first we're the patients here, and then if we can manage it, we can try to help them live with their uncertainty!

I'm feeling so uncertain about this post that I'm wanting to make it go away. I'll leave it, though, as I think I have a thought or two in here. Maybe one of them is that we have so little to work with ourselves, how can we possibly manage everyone else's feelings about us, too? It's their job to find a a way to take care of their discomfort without trying to fix us.

Because I don't know how else to end this:

 

[jewel]

Gracenote-- Yes, I think you are right that people feel uncomfortable with any chronic condition, much less one that is poorly defined and not presented well in society at large. Even people with something recognizable such as cancer are given advice by "friends" practicing medicine without a license to tell them how to cure themselves or better manage their illness. It does come from fear... and from the desire to have control in life. Seeing chronic illness threatens the tenuous sense of control that many hold. And, yes, the main responsibility of the ill person upon encountering such reactions is care of self, reestablishing one's own equilibrium. Then, if energy exists, holding compassion for the other or educating the other.

An idea for another thread: statements to use to deflect "well-meaning," "fear-meaning" recommendations: e.g., "thanks, I'll run that by my specialist..." change subject...

 

[serenity]

i like that, "it's their job to find a way to take care of their discomfort." i like that a lot.
on Spitfire's thread i mentioned that lately i have been trying to see their comments as denial rather than not caring. that is what i meant. i get that illness is unpleasant for them. (oh sorry). but come on, be big people & deal. dont' hurt the person who is already hurting.

 

[Misfit Toy]

My brother, who I once loved as a child, I do not like at all now. Once I got sick, he told my mother that he would not come over to visit because I have a disease that is in the AIDS family which he did not want to get. He also said he would hire a lawyer to prove that I wasn't sick when she died, in case my mom left more money to me due to being ill. Now, a couple of months ago, he calls to tell me he needs me in his life after my mom passes because he has a heart condition. Are you kidding me? Where were you dude? NOWHERE. Every surgery, every moment of illness has been shared without him in my life...at all. He told me 4 years ago that I was a loser because I still lived in an apartment. He is horribly abusive. Honestly, I would seriously like to banish him to some far off island, never to be seen again. If he gets a pimple on his pee pee, he freaks out. Try living with this.

I recently had a massage therapist recommend that I go to a spiritual healer. This spiritual healer is $250 a pop. She cures the incurable through matters of the mind and gets to the root of the problem.....our childhoods. GREAT. Not to mention, another Fibro sufferer recommended her to me as well. Said that she is what made her better. I have no desire to go and have someone psychoanalyze the situation....me being ill anymore.

Years ago, another CFS person took me to her church. Her church formed a circle around me where they put oil on my head. They walked around me chanting that the devil release me. It was awful. I was 21 years old and scared out of my life. I came home and cried to my mom wanting to know if I am being punished. A fellow CFS friend recently said to me, that he feels that our illness is KARMA coming back to bite us.

I don't feel that it is just healthy individuals that harm us. It can be the fellow PWC, as well. I don't always like talking to others with CFS. Everyone has their own beliefs but most people feel the need to inflict their almighty opinion on you. It's BS.

I am lucky to have some CFS folks who are like me and feel that this is a physical illness and of course has an emotional component. I do not feel that GOD will cure me but can assist. I hate when someone says religion can cure all because I have prayed and prayed.

People need to think before speaking. That is the big lessen. Not just to us, but by us as well.

 

[serenity]

wow Spitfire, i am sorry to hear the stuff you have endured. i know it's common for most of us i'm afraid to say.
i could give you my list of similar experiences, but there's no need. you & i both know that you & i both know all about this.

 

[bigmama2]

ahhhh those are some classic ones!

my recent favorite was a neighbor, who told me he had a great idea of something that would make me better--- hope you are sitting down for this one-- he said- "just go live in the woods for two weeks, that'll force you to get things straightened out, and i'm sure you'd come back feeliing so much better." well, I prpmptly replied, "why dont you just take your son (who has severe mental retardation) to the woods for two weeks, that should straighten him out." that shup him up pretty good!!!

 

[*GG*]

ahhhh those are some classic ones!

my recent favorite was a neighbor, who told me he had a great idea of something that would make me better--- hope you are sitting down for this one-- he said- "just go live in the woods for two weeks, that'll force you to get things straightened out, and i'm sure you'd come back feeliing so much better." well, I prpmptly replied, "why dont you just take your son (who has severe mental retardation) to the woods for two weeks, that should straighten him out." that shup him up pretty good!!!

Love this, will try to remember this some day if someone insults me in such a manner! A lot of people do not probably know better, but that should give them a quick education!!

 

[Sunday]

And I can attest that a couple weeks out in the woods won't do it, should you need backup: for 28 years before I got this disease, I lived in the woods with no running water and no electricity. Nature can do a lot for us, including physically, but nature can't go against the laws of nature.

I envy you your quick reply; if you have brainfog, it doesn't seem to be holding you back much!

 

[Stone]

I am lucky to have some CFS folks who are like me and feel that this is a physical illness and of course has an emotional component. I do not feel that GOD will cure me but can assist. I hate when someone says religion can cure all because I have prayed and prayed.

People need to think before speaking. That is the big lessen. Not just to us, but by us as well.

In the first year of my illness, I was pretty much bed-bound. I found it difficult to watch much TV but I could read a little if the print was right and the paper and ink in the book wasn't too toxic. After reading everything else in the house, I turned to the Bible I kept at my bedside but never actually read much of. I started reading and reading, and really enjoyed it, so after some months of copious bible reading I decided I would try to make to church. It took everything I had to get up, dress, drive there, and all, but I managed to make it there almost every week for several weeks in a row. Then one day, they asked if anyone needed prayer for healing. I thought, "Yeah, I sure do" so I went up for prayer. A couple of people came around me and asked me what the problem was (which seemed strange to me since God already knows what's wrong with me), so I told them and they prayed for me and it was fine and actually comforting. Then afterwards, one of the people that had prayed for me, a bald guy with glasses as thick a Coke bottle bottoms who didn't know me, came up to me and said that if I would 'spend some time in The Word' (read my bible) I would develop enough faith to be healed, implying that it's my lack of faith that is preventing me from being healed. I looked at him for a moment and said, "How's that working out for your hairline and your eyesight? Listen here, buddy, I spent over 11 hours 'in the word' today and yesterday and the day before and the day before that and I've had to exercise more faith just to hook my bra today than most people use in a year." I couldn't help myself, and maybe I was mean, but I just couldn't tolerate the utter arrogance and insensitivity of this fellow. It didn't make me feel any better, verbally gut punching him like that, but I can assure you he will never say that to someone he doesn't know ever again. If I had it to do over, I would have been more polite, but I just didn't have it in me that day.