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"suffers"?

jerecare
  • By jerecare
  • Posted November 2, 2009 at 3:47 pm · 16 replies
  • In Living with NF2
  • Shared with the public
  • Edited November 2, 2009 at 3:48 pm
0 Recommendations

I've been reading posts and several incidences of people asking or saying you/me "suffers" from NF. Who is a sufferer? Why do you choose to suffer with it? Suffer is not the same as living with it. But then why "live" with it? Why not live your life and consider it just one more thing to deal with. Everyone has things to deal with in life. If you really want to say "I suffer", fine. But to imply or suggest others SUFFER with NF or that schwam... word is NOT very encouraging.

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16 replies

Robtygart

I totaly agree, but don't forget, some people have pain from it, some do Suffer. I don't I am very lucky.

jerecare

I have pain man. but it still ain't suffering. it's perception, belief.

Kierstysmom

I presume you are directing this at me as used that term in my last post. I apologize if I've offended you. My daughter has NF, and she does suffer as do many people that deal with pain, disfigurement, and death due to NF complications. I think it's great that you are not suffering, but quite frankly I think you are using semantics to find a way to be offended.

http://www.merriam-webster.com/dictionary/suffer

jerecare

How am I offended?

Kierstysmom

I've been reading posts and several incidences of people asking or saying you/me "suffers" from NF. Who is a sufferer? Why do you choose to suffer with it? Suffer is not the same as living with it. But then why "live" with it? Why not live your life and consider it just one more thing to deal with. Everyone has things to deal with in life. If you really want to say "I suffer", fine. But to imply or suggest others SUFFER with NF or that schwam... word is NOT very encouraging.

Perhaps I've misunderstood you post.

jerecare

It's an encouragement to others not to view their situation as suffering. You are what you think - to a degree. Stop thinking you "suffer" and you won't believe thus feel you are. Like the hymn goes "we are more than conquerors"

In this world nor of this body is everything hunky-dory. Just carry on.

swtlilwamom

I think this is a good post to add a plug for my blog:
www.thrivingwithneurofibromatosis.blogspot.com

Cheers!
Kristi

Kierstysmom

I guess it's just perspective. I suppose, given my daughter's personality, when she is old enough to understand hopefully she will feel the same as you do. But for me, I don't have NF, and I'm a mother. Every time we go to another doctor, do more testing, schedule more procedures it breaks my heart. I just wish I could read something, or find some study, or some doctor that will make it all go away.
I get what your saying about wanting be encouraging, but in my opinion censoring words like "suffer" trivializes NF and those who have had there lives severely affected by this disorder. In no way am I equating suffering with weakness, but rather strength and courage.

KittyLover

I 'suffer' when I lose something that is near and dear to me. I 'deal' with NF on a daily basis. I 'deal' with the pain and other things related to NF. I 'suffer' when I get sick with the flu. But I don't really 'suffer' from NF. It's something that I live with daily.

I recently suffered the loss of a beloved pet - something my hubby and I are still grieving over. I was suffering from the flu (NOT h1n1) several weeks ago.

I guess it's all on how you look at things or what your definition of 'suffer' is.

jerecare

Yes perspective is important as I mentioned. How you define a term individualistically is important too. Words do have power. And, I prefer to not give nf any more power, and to do that, I watch the words I use, the perceptive and outlook of my life.

I hope no one feels resigned that they must "suffer." It is a choice.

JLEE2

I so agree with jerecare. Yes, physical pain can be associated with NF - or any other health condition - but to say that on "suffers from" is in so many ways perception, belief and buying into negative thinking. Strong and brave is facing that fence (figuratively speaking) head on. I have discomfort, I certainly don't look like most people, and I know that I won't get out of life alive - not matter what the cause - and I lived far too many years buying into psychological torment. There is no glory in suffering - just suffering. Even though one might get some perverse satisaction from the emotion - it doesn't pay. I think jerecare's comments are valid, sound, and healthy.

jelm

JLEE2 -thank you for your post-I couldnt' agree more. This is a place for discussing very real concerns, fears and for support, and and not every ailement a person has is related to NF. Doctors are "practicing medicine" and as with every medical condition there are unknowns. We aren't alone.

My son has spontaneous NF2. His story is not defined by NF, but about living and going forward. If you've ever played football because it's your passion, with a visor to protect your seeing eye, an elbow pad to cushion the blow when your tumors are tackled, made it through a season without your coach realizing you have no control over your left hand(paralysis), and played on days you've literally been sick & dizzy from a headache from the VS, but are known as "Mr. Defense," played the entire game(because you had a breathing treatment before the game), walked off the field after a loss smiling because you played, then you understand going forward. IMO suffering is a state of mind.

jerecare

Well said JLee2

SafetyGuy

jerecare, although I appreciate your perspective, please have some compassion and understanding for others as you obviously expect for your perspective. Definitions are best left to books and individuals; if I think myself wealthy am I? Sure, you will say in life, but those are just hyperbole. Live. Love, rejoice, and let others be themselves too.

jerecare

Sure. But I am not going to back-off or even tone down my position to placate others. I don't read this position enough. It should be out there. We should not think it just common sense nor easy for people to believe. It will get people to start thinking. Asking questions. That's great. Putting someone down is different than refuting a common reaction to life troubles. I am merely the voice for one perspective, albeit not a popular one.

muffinturner

I suppose my daughter does not suffer from NF1 but she does suffer from vision impairment, pain, discomfort, and itching that brings her to the brink of total melt down all of which are caused by her NF1. Hopefully she will have a positive attitude as she ages such as yourself:)

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