I know I'm only new to the forum but it goes to show how thick I am.
I haven't noticed anything said rudely or negatively. I've always been slow that way. Just like if I offend someone else, I'm so daft I don't know I've done it unless they tell me.
So please if I offend someone let me know.
This is absolutely correct and i couldn't agree with you more on this
"I also think posts are often misunderstood. Most posts are written with
good intention. Maybe some cannot see that intention and assume it is angry or bitter while the poster is only trying to make a point?"
I just recently experienced this exact thing, though the more I tried to
appologise for this persons misunderstanding and upset, explaining my pure intent, the more "angry or bitter" the responses I received. I am still deeply saddened by this out come because i actually thought this person was on good terms with me but I must of lost that, and i still dont understand why or even when considering i've not been here for almost a month!
I did end up feeling angry but it was anger born from frustration, frustration over not being able to change the other persons 100% incorrect and far reaching assumptions of me being something i'm not, never could be and never will be. I let those self destructive emotions go because I realised that this person wasn't capable (in that moment in time) of even seeing my actual words or motive. In their mind my words and motive was something else, you can try but until they calm down your just adding fuel to their misplaced anger.
It's not your fault if someone see's hidden meanings in the things you write, personally I dont know how NT people can think that way in the first place so i'm not going to even try. I have 4 family member's with Autism (both brothers, both children), "Say what you mean and mean what you say" is the way I have had to be ALL my life, its the only way I am ever going to communicate!
So thank you wonderful people for posting your thoughts, we all need to remember that the people we respond to are usually coming from a kind heart, respond in kind or dont respond at all. If you are in a frame of mind that is finding hidden meanings etc then take a look within yourself because you will probably be the one jumping to the wrong conclusion.
If at any time something is abusive, the best thing to do is, step back, take a calming breath and report it. Medhelp moderators will delete any posts they find thats of inappropriate content but you can always report something to bring it to their attention sooner.
Great topic :-)
Just wanted to throw in my two cents as a newbie. I wholeheartedly agree that ALL reactions to this disease are valid reactions which should be met here with compassion and understanding. I would even go so far as to say that those of us who have the ability to articulate strong negative feelings toward this disease - and the courage to share them here in "public" - sometimes serve as an agent of catharsis for those of us who do not have the inclination to do so.
Respect and love to all here is not only the key, but also what I have witnessed in my short time on the forum. I truly appreciate everyone's ability to speak their mind openly and debate respectfully. It serves us all well.
Thank you, deebs, for your post on this subject. Right now I don't feel up to the kind of thorough, insightful comments you have provided, so I'm grateful you've done it for me. A few observations will then suffice for me.
Each of us is entitled to all of our emotions, including anger and bitterness. We are also entitled to express them here as they arise. In my opinion, those who immerse themselves in such negativity on virtually a daily basis are also immersing themselves in corrosiveness and hostility, to their own detriment. However, that's their choice. No problems.
What I DO object to, and object violently, is any post that twists another one for whatever purpose. I well remember a post here, off topic, expressing the tragedy of mental illness and how it had affected some of those close to the poster. That was followed by someone else immediately with a diatribe against the mentally ill because of the horrible harm they can cause. Absolutely true, yet so twisted, so unkind. The first poster was remembering with sadness; the second was violating the first's legitimate right to grieve in her own way. A separate thread would have mitigated this somewhat, but no response would have been better. And kinder. And not twisted.
I use this example deliberately because it does not relate to anyone's experience with MS, but does relate to attitude. Life does not revolve around us. Have any emotions you want, express them here if you want, but do not turn others' feelings into grist for your mill.
I say this as a member of more than 4 years' standing, as a former Co-CL, and as one who wishes only the best for the forum. Baiting for the sake of conflict deserves its own chapter somewhere, but its application should not cause harm to those who only want to support one another.
by the way, it took me about 10 min to remember that term. My brain is stuck in the mud today.
I'm not so sure I'm angry or bitter. Those words fail to capture the mood. I do get scared and fearful. As far as MS an how I am treated, I guess the best phrase would be: "righteous indignation" - retribution, retributive justice; anger and contempt combined with a feeling that it is one's right to feel that way; anger without guilt.
Over the course of my four years on this forum, certainly more than just a few have tossed around the words anger and bitterness. Many have talked about their anger, towards:
-doctors who didn’t do enough or care enough to get to the bottom of things, who aere lazy or disinterested and who wrote their patients off with ‘conversion disorder’ or anxiety while the MS continued to progress
-their own bodies for failing them,
-spouses who aren’t supportive,
-adult children who demand too much,
-employers who discriminate,
-disability insurers who deny their honest claims,
-medical insurers who deny necessary tests,
-the US govt which doesn’t provide access to basic health care for all,
-NHS who ration health care,
-pharma companies who place profit over affordability and in some cases safety.
There is no shortage of anger expressed by many in this group. As there is no shortage of compassion, understanding, support, and shoulders to cry on provided here. This is why I have stayed so long, to receive and provide this kind of support.
I agree we all have our moments of anger and bitterness, though for me, so far, these moments are few and far between. I don’t believe anyone said we don’t have such moments and therefore are “lying to ourselves and others.” I don’t think anyone is saying they are “smiling and cheerful all the time.”
I actually don’t think that posts are often misunderstood. I think that one of the things that makes this forum work so well is that most posts are in fact very well understood because most are able to understand and empathize with and the poster’s intent even when they haven’t necessarily experienced the same challenges. I do agree that on occasion posts are misunderstood, such as Lulu’s recent post about an inspirational book, and JJ’s post about the wonderful day she recently spent at the beach with her family, which you seemed to misinterpret as suggesting that no one should ever be angry and MS is a wonderful thing and therefore denying the struggles that many here face on a daily basis.
I do agree that most, not all, but most posts are written with good intention, such as Lulu’s and JJ’s post mentioned above. Unfortunately on occasion there are posts written with the intent to bait and create conflict. Fortunately most members here have the maturity to not rise to the bait, and most take the high road in such cases. I think that when one “tries to make a point” with sarcasm, for example such as referring to JJ as “happy smiling surfer girl” it is not with good intention.
Having anger and bitterness is normal, fair, appropriate, reasonable and natural. It is when that anger and bitterness in the form of sarcasm and hostility is directed at other members here that is becomes inappropriate, unreasonable and unfair.
It’s surprising and disappointing to hear you say you don’t feel welcomed here, Sumana. You’ve been around for several months now and are an active participant and contributor to the group. At New Year’s you thanked those on the board who showed you kindness at times when you felt angry, sad and afraid, and you thanked all that post regularly saying “You are each dear to this board and you work to keep the MH MS board one of the best!” I’m not sure what changed since then, but I sincerely hope that others aren’t reluctant in future to post topics that are encouraging, inspirational and hopeful, for fear of being labeled Pollyannas who are insensitive to the more disabled and progressive among us.
I think that angry is normal but, not a way to deal with life. It's all in the way you look at life and choose to deal with it along with coming to terms your personality. Im a firm believer in if you put negativity out there you will get negativity right back. Keeping things bottle up inside is not a good way to live either and again this will not change anything but, effect you in the end.
Communcation is so important to have along with a good support system. Angry and bitterness is simply not dealing with life nor will it change or make anything better.
Again, These are only my opinions and the way I choose to live. Yes, I have bad days everyone does. But, my bad days right now are because my pain is so bad and I'm trying everything I can right now to make it better. Once I have better pain management things will be a lot better for me.
Take care everyone....... Every good posts
I am currently seeing a therapist who specializes in people with MS. She had a very good way to describe dealing with gaining the knowledge that we have MS. She likened it to Elisabeth Kübler-Ross's 5 stages of grief. Just substitute your 'normal' pre MS life for death.
It has helped me process and I think I've reached Acceptance :-)
1) Denial — "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.
2) Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?" Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.
3) Bargaining — "I'll do anything for a few more years."; "I will give my life savings if..." The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..."
4) Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point... What's the point?"; "I miss my loved one, why go on?" During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
5) Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it." In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event.
I'm going to answer questions the best that I can. I'm angry with doctors yes, I am. But, really when you look at it they can't change my situation and neither can I. Does it do any good at all to be bitter or constantly angry? No, it changes Nothing but, making things worse on you and your family.
No, I'm not able to take care of my kids. Yes, this hurts me but, I raise them to be positive no matter what happens in your life. My kids are wonderful kids and constantly helping me and loving me no matter what. They know that I'm sick right now and they also know their was a time in their life I did everything. I worked 64 a week and went to school and raised a family.
Acceptance, yes I have accepted my life how it is now. I can't change it and neither can the doctors. I know that they feel bad but, don't know what else to do. I don't live in the past. If I don't have acceptance and I'm angry and bitter all the time. Image what that would do to my family, my kids, the people that love and respect me. I want to have no regrets in my life which means I have chosen to be happy, have acceptance, and live a positve life not only for me but, for my family.
If something would happen to me tomorrow my family will look back and think nothing but happy thoughts.
So, if you don't have acceptance, love, peace, positive thinking, hope. What do u have in life? Blaming myself or others for what happen to me is not fair nor will it change anything but, put a bunch of hate in your heart that truly should not be there.
I hope this explains to you where I'm coming from.
Life is too short. The only thing that we have the power to change is the way we think.
Because of my lack of English words sometimes I want to say (copy) Alex text here that is exacly what I want to say: (thank's Alex for the letting me borrow it ;) )
"So, I say in good cheer that Sumana you are a valued part of this community who brings a unique perspective because of your advanced state. I read with a tear in my eye about you losing your ability to walk. I cannot imagine getting my mind around what you have to deal with on a daily basis. My day is hard enough now. So stick around and continue to share in the journey."
We all are SO different, I for one hardly ever get really angry. I remember from when I was young and badly treated by my first boyfriend, never did enything about that, because I just wanted to be nice. One very fine day, he overdid it and I got SO angry, and let it all out even throw some redwine glasses up on the wall (broke them and wine all over). THAT was one of my precius moments, finally being angry to someone that so deserved it. (25 years ago)
So I think it is just so different how we all deal with things, and it is good for us to see all kinds of perspectives here on these forums. Everyone of us is precius in their own way.
My best to you all,
I for one have always found your perspective gives me something to ponder over. As for the anger- I go through that. The first time, it was because someone suggested that the loss of function in my left arm was an emotional problem. The next time, it was because I had a name for the disease that was robbing me of my mobility- and the knowledge that it wasn't curable. Then the last time, it was because a new doctor took away the only thing that might help- my disease modifying medications.
I believe the anger we feel is a form of grieving. We are not grieving over someone's death, but it is still a loss. It is the same process. We grieve over the death of our good health. The loss of the life we wanted to have. There are never any promises of a happy and productive life, but now we know for certain that things will never be the same.
For now, I am not angry. But I am sure, as things deteriorate- I will experience that anger again.
Please stay Sumana. I appreciate your contributions. Please message me if you need to vent, or for any reason at all.
teenyturner, I half laughed..I sure did at your description of nosey, meddling busy-bodies. "...don't we all know some! I can understand a bit of what you are saying ....those that want to see us quickly into that nursing home before we are ready or even need it.
I, too, am getting close but it won't be because of the nosey, meddling busy-bodies. It will be because I know it is too much for a man I love too dearly. I won't allow his life to stop because mine has...He has been so adamant that he will never allow it that plans are being put into place for another to have legal papers to oversee my care.
I do hear you and agree...let those nosey, meddling busy-bodies find something else to do with their spare time.
and DaphneJ I do think fear is playing a very big roll in the problem here.
Tingle, I haven't lost my ability to walk if what I do is called walking. It is painful, I push against a walker with my husband pushing a wheelchair behind me. It is more of an exercise than walking. I still need help bathing. I can't lift my foot in or out of a tub. Sometimes my hands are too weak to scrub. I can't cut with a knife and can no longer use a fork as I miss the target too often.
As far as anger in real life? I think I am as Heartfelt once posted apt to let my husband have it when I am in pain...a great deal of pain. On any given day you will find my mood even...maybe joyful and happy. Now, if I feel a doctor is jerking me around...lol...don't think that anger won't be there. I spent ten years with their foolishness and have tired of it!!
DaphneJ, justifiable anger can bring about change. It is very useful when we need it to move us on our way. It can be a warning to us...something is Wrong HERE!!! So, anger has it's place and I believe I do use it when I feel necessary.
Again, thanks to both of you for posting. Food for thought. I hope those that hide their anger with manipulation can see themselves too.
Tough emotions anger and bitterness. We all have a different journey in this life and there are so many differing courses of MS. You wouldn't be human not to feel the above emotions at some point but I think with maturity comes the ability to deal with these destructive emotions by making peace with yourself and allowing them to flow away.
Animals act on instinct, they don't have a choice. We are fortunate to have the ability of insight or reflection which is allows us to review our actions and make a new choice if we want to next time a challenging situation arises. So you can choose to make peace with yourself and choose to make peace with other people but of course it is up to the other person to forgive as well.
This forum to me seems to be made up of a wacky, caring, supportive, and loving people. Of course from time to time we are going to have our differences which is normal but at the heart of it all is respect. Remember I'm one of the loonies who has been on a weird diet since September against doctors, neurologists, MS society and the majority of people with MS. We may offer different points of view but I don't see any evidence of anything really nasty, or maybe I just haven't been looking hard enough.
So, I say in good cheer that Sumana you are a valued part of this community who brings a unique perspective because of your advanced state. I read with a tear in my eye about you losing your ability to walk. I cannot imagine getting my mind around what you have to deal with on a daily basis. My day is hard enough now. So stick around and continue to share in the journey.
Hey, MS doesn't make you the winner in any popularity contest, it just gives you more empathy to deal with poor newbies like me who are struggling to deal with their new reality.
I think feeling angry is not only justified but perfectly normal. Just one of the wide range of emotions we humans get to experience. Not letting yourself get angry and suppressing it in my humble opinion causes more harm than good. If on the other hand, anger becomes all consuming and it's overshadowing everything else then I think help is needed.
I think that much of the anger many MS'ers feel comes from feeling like they have been cheated out of the life they thought they would have. Many others have been treated very badly by the medical community. You should always feel welcome on this board, if it makes others uncomfortable that is their problem not yours. Maybe it's just frightening for those with a fairly benign disease course to hear that disabilty can progress to such a point.
I want to make a comment here.
I am not as disabled as you both sound but I will get that way. I do feel anger, bitterness, fear etc. Mostly these feeling are directed towards myself and I try not to let myself dwell on them.
Mostly those feelings are born out of regret. Regret for things not done when I was able to do them, things not said when I should have etc but nothing is going to change the past or my present and unfortunately, my future. all I can do is live my reality.
The one thing I find hard not to feel anger about is nosey, meddling busy-bodies. Very little of my life is private anymore and I guard what little privacy and independence I have and I HATE with a passion those do gooders who want to dominate everything in your life. I'm managing ok at the moment with friends and relatives helping with housework, social events etc. I shop online etc.. So, why do the welfare people want to send people in to clean my house, manage my financial affairs etc. It might take me all day to clean the lounge floor, but hey, guess what? I've got all day. My house is spotless. Yes, I may be on a pension but guess what, I fund it myself through savings, so I can budget and invest quite well. So what on earth do they think gives them the right to butt in where they aren't wanted.
Now, if you're talking about whinging and whining about my condition......hey, I can do that as well as the next person, it depends on my mood, the time of day, whom I'm with, how I feel and if it's a full moon. Close friends and relatives just tell me to shut up and get over myself. I find them very refreshing.
Better go, the groceries are about to be delivered.
So Heartfelt, you feel no anger at doctors or bitterness at not being able to care for your children? You have accepted it and have been able to go on?
What were your feelings as doctors continue to let you down? What are you feelings at not being able to care for your children?
Acceptance? See, now I am questioning. Maybe this will show me the difference in how we think or maybe what a word means to us.
Corrections ; I'm not able to do anything on my own.... Sorry eyes r going blurry.
I think that angry and bitterness is not a good way to deal with anything. I will say that its hard to handle at times but being full of angry is getting us nowhere. I feel this is about support and trying to help one another.
It has taken me a long time to accept my situation but I have because if not I feel that I could be missing out on really enjoying life and having peace.
I'm going to swallow alittle bit and say that I'm 34 also in a wheelchair, unable to move my whole right side, bladder problems out the butt, pain, etc.
I get do anything on my own..... Getting dressed, eating, cooking, putting shoes on, showering, washing my hair, and I have care in my home 5 days a week. I'm not telling you all of this for pity but, there is not a day that goes by when I'm angry or have bitterness. Yes, I'm angry at doctors but, that doesn't change who I am and never will.
Life is way so short for any of that if people want to waste there time being angry or bitterness than that's their choice. But, for me its a waste of life and time. There is so much more to life than that but, again this is a choice.
We may not have choose this life but, we can sure try to accept it and make thing better.
Sorry, my mind is now going blank and my eyes are getting heavy. I took a couple of zanaflex.
I hope this makes sense to you....
Misty............ I believe we can all make a difference in everyone life if we just do it with a positive attitude.