Discussion in 'Homebound/Bedbound' started by gb66, Aug 23, 2014.
Everyone has different reactions to things, depending on their own individuality.
I've tried to educate my parents and siblings about my CFS and they've never once said a word in response, not even an "Oh." Same with extended relatives at family reunions I've told, feeling the need to explain my exhausted brain-fogged behavior. Not one word. Which leads me to believe that they don't believe me.
So I, on the other hand, would be thrilled if one of them mentioned I have CFS. That would represent acknowledgment to me.
Some people are private though and don't like personal things mentioned in public. I'm the opposite of a private person. I wear my heart on my sleeve. So I can't help but blab it from the rooftops. That's just me.
We've talked before about how doctors don't believe we have CFS, or believe CFS is real. They'd sing a different tune if they contracted it. Or else they'd do like my ex-mother-in-law did. She has CFS, yet still called me a hypochondriac. Weird.
I can't remember when I first heard of CFS. I know I'd been ill for several years.
Don't think I've ever heard a joke about CFS. Doubt if most people have heard of it.
Anyhoo, to me there are two good things about being old. I don't have to work
anymore, and I don't care what anyone thinks about me.
On the few occasions when I said I couldn't do something because of health reasons,
and people wanted more info, I didn't use the term CFS. I just mentioned a symptom
or two. "Oh, not much energy; insomnia. You know. Just feelin' poorly."
Hi, Patti, we were posting simultaneous. (Quoting from an old 1940s radio program
wherethe "ly" was never attached.)
'Course CFS could mean a lotta things:
Can't Find the Salt. Combat Flight Simulator. Certified Figure Skater. Connie
Francis Society. Cantaloupes For Sale.
Patti, I know that silence you're talking about. It's worse than somone making a remark. At least they acknowledge you with a reply!
I do know I am way too sensitive to what people think about me where CFS is concerned. I am so afraid they'll think it's "all in my mind". I need to develop a thicker skin.
Thanks for the reply. GB
Rock, I can remember hearing a couple of jokes on tv a few years back. And I heard one of the news guys make a very insensitive remark about people who 'claim' to have multiple chemical sensitivity. He said it's a non-illness, or something like that.
That's a great list for CFS! How can I join the Connie Francis Society? Oh, and what do you charge for cantaloupes? (Now I'm trying to think of more of those.) Hey, it could be our next game! Thanks for the smiles.
Candy Free Society
Care For Self
Careful Freaky Smiles
Couldn't Find Something
Constantly Forget Syndrome
Caring Friends Sponsorship
Clowns Faking Sickness (yeah right )
Carrots For Seals
Can't Find Spellchecker
Clever, Funny Soul!
Careful with licorice root, it could possible raise your bloodpressure a lot even when only taking a little. I used to like it as a sweet or in tea but have to be very careful with using it.
I just tell people I have Myalgic encephalomyelitis! That shuts them up pretty fast! .
I say that I have a chronic illness and leave it at that.
Thought of another CFS. One that folks commenting on the news frequently
post. Often in response to something young people have done. CFS
Can't Fix Stupid.
Jam, mayhap you had a mother like mine. Her guiding principle in life was
not something like: what would be good for me and my family. It was
"What Will the Neighbors Think". (My father's guiding principle was,
"Nobody gets between me and my liquor.")
Barry, I'd forgotten all about Myalgic encephalomyelitis! Used ta be I cud
spell it. Not any longer.
Hope you're all having the best day possible.
Rock, I grew up in a "what will the neighbours think" house. It took me years to lose that mentality and not care anymore. And I'm sorry about your dad. That never makes for a happy household.
Cats, For Sure
Canes For Seniors
Control Freak Syndrome
Chocolate Fudge Sundae
Chocolate Fudge Sundae (That one needed to be repeated in protest to Soul's Candy Free Society!)
Can't Feel Sensitive
Craving For Sleep
Chloroform For Surgery
Cute Fuzzy Slippers
Cosmic Flying Saucers
Cunning Feline Stealth
Country Fried Steak
Cold Fruit Salad
Calorie Free Soda
Craving For Strawberries
Can't Find Shoes
So then, could M. E. (Myalgic Encephalomyelitis) stand for Miserable Existence'? Just wondering!
Sorry GB LOL Chocolate Fudge Sundae is TDM for me (three day migraines) Ooooh I bet migraines could fit in the ME game
I think people with CFS are in a weird predicament. I don't know of another illness which is so devastating and yet when you go to the doctor, the very person who is supposed to help you, you are treated as though you are delusional. "don't react - you might encourage her in her delusions" - that's the feeling I get when I tell doctors about crashing. They don't say, how awful! or anything to acknowledge its reality. Instead their face remains carefully blank (like hanginthere described). once in a blue moon I get an uncensored reaction from someone (a chiropractor once) when I described crashing after minimal exertion, and I saw a look of horror on his face. That was the last time I saw that.
Anyways, yeah, we're not supposed to care about what others think about us, but if no one validates your experience it can get difficult to believe in your own reality. Did you ever see Gaslight with Ingrid Bergman and Charles Boyer? It's a great movie, and I remember thinking, oh, that would never happen to me, I would never doubt myself - hah! How often do we ask others what they think of something, or say, is it just me, or is this really happening?
So for the most part people with CFS I think are operating in a vacuum. We don't get validation or acknowledgment that we're even real! I think this situation has all the ingredients for creating shame.
Having said all this, yes, I agree with everyone we're not supposed to care about what others think of us, I can't depend on others for my self-esteem, etc. But this isn't just an issue of getting approval from others, it's getting confirmation that what we experience is real, that we're not nuts.
So I think it's a difficult situation and that's one reason this board exists, to get validation and confirmation that we're not crazy or defective. Because it just is very difficult when almost the whole world (and especially the people - doctors - who are the ones designated to know what's going on) denies your experience, to maintain belief in yourself and not think there's something wrong with you.
Remember when CFS was called the yuppie flu? If that's not denigrating, I don't know what is. I read in Osler's Web about patients who were sent to the Mayo Clinic and saw posted on someone's board there something that was supposed to be funny, something like, "you know you have CFS when ..." and then a bunch of sarcastic tag lines.
So I've learned in general not to mention CFS unless it's someone I trust very much or has a legitimate reason to know. For everyone else, if the issue of why I'm not working, etc. comes up, I just say I have some health problems. But I think having to hide what's really going on all by itself creates shame (sort of like living in a CFS closet? hope I don't offend anyone with this analogy!)
BTW, I like the CFS word game! maybe next time I go to the doctor I'll just say I have cunning feline stealth!
Mary, I like your thought provoking, realistic post. I do agree with what you're saying because it's exactly the way I feel about having this disease. Those have been my experiences with the medical profession also.
It's easier to not care so much what the 'world' thinks, but when it comes to the people you have to depend on to get through your days and nights, it's a different thing entirely.
When you need medical care or a caregiver at home, or when you have other relatives that are a close part of your daily life it is very difficult to keep your self esteem up, especially when you're so ill.
If you don't have an illness like CFS, with the stigma that's attached, you don't really get what this is all about. It's not about self worth or self esteem, it's about being very ill and needing support in every way possible.
This sounds like I wrote it. Lately, after having this illness since 1993, I am hearing derisive comments about how much I rest. Coping is what I am doing. I am active when I can be but sometimes even a long phone call can leave me exhausted.
All sounds very familiar, the biggest lesson I'm learning from all of this is that I have to be(come) the 'king' in my own kingdom and have to rule without 'advisors'. In the sense that learning to trust my own judgment is the most important thing I had/have to learn. Experience has taught me that daring to live the way I 'think' is best for me has brought me the most benefit in feeling better both physically and mentally.
The videos of the medical scientist who are seriously researching the symptoms of CFS/ME in relation to other parts of health have been very helpful to me to have a better understanding of all what is going on. It also shows that we are NOT alone in this. There ARE people who take us serious and who are investigating ways to support us in this.
I have questioned myself for a long long time as to what I am doing that is causing this but one thing I know is that I loved the life I was living and had no reason to find an 'escape' not to have to continue that life.
My approach to life is to try and take something from every challenging situation that I want to learn that will help me in becoming a happier and more stable person despite of disadvantages. That helps me enourmously to shift my focus from all that isn't right to all the 'right' I can take away from it.
Like learning to trust my own judgement more and more gives me more peace of mind. Not just in health but also in other area's of life. Even though the situation itself isn't 'good' or the seemingly outcome may not be good, I challenge myself to take something good from every situation. I remember when having to deal with SSD docters/officers who would even wipe acknowledging docters reports right from the table, I was determind simply to keep my calm and not leave the office without being in a calm state, which freaked out the docter because I wasn't ready to leave yet. My victory was in allowing myself the time to do this, even though it resulted in him putting in the report that I had a theatrical personality or something. It's great to find acknowledgement in the people on here who understand what all is involved in this Crazy Silly Freakyness that we get in our lives. No, we are not crazy and no we are definitely NOT alone there are kazillions of people experiencing similar situations. And the only ones who can really understand are the ones living it but there ARE others who are trying to understand too so don't lose hope because those who you meet are not those ones.
Separate names with a comma.