Explaining to people about CIDP.
Explaining to people about CIDP.
AnonymousJuly 26, 2006 at 9:36 am
Yesterday I re-visited a local lady in hospital with CIDP. Paralyzed to the waist but progress being made. I took with me printouts of material from an old GBSFI forum thread “Explaining CIDP to other people.”
Just what we need she said as did her husband, son and daughter.
It is going to take some space up but I will now repost it here!
Explaining CIDP to other people. Taken from a GBS FI forum.
Some of us have been doing it for a while, some have just started and may be having difficulty explaining it to family and friends. I know there are lots of us out there. Put your stories in here and we can start to pick out the good and be able to communicate to our friends better.
I have gotten it down to this: first a chuckle: “I can’t win a lottery but I got a 1 in a 100,000 disease.” That lets them know how rare it is and that they probably won’t understand it.
Second I use the electrical cord comparison. “It is an auto-immune disease that messes up my nerves. Like the rubber around an electrical cord. If you cut that off and then ran current through what would happen? It would short out. The appliance wouldn’t work. That’s why my feet and toes don’t work right, and why I don’t feel things so good. Also those short circuits hurt me and cause me a lot of pain among other things.”
By this time they either want to leave or ask for more information. But it gives them a quick overview of what’s going on. After that if they want to know more we can certainly share a ton of information. It may not be exactly correct but it is close enough for them to understand. I’m trying to make it simple.
Third I would talk about the immune system and treatments and how the disease has progressed and how I am doing.
Then I would answer any of their questions because if they are still with you by then they will be full of questions.
That’s how I try.
Location: London, England
I start out by saying that I have CIDP, which is a rare neurological disorder similar to MS. They may not know what a neurological disorder is, or even what the symptoms of MS are, but everyone recognizes that MS is terrible and mentioning it gives a point of reference.
After that, if they want more info, I tell them what symptoms I have.
Then, if they’re still listening, like you I go into the nerves being like a wire, etc.
By that time, they’re either in tears because of this terrible disorder or they’re bored to tears. I’m never sure which.
Best wishes in the battle. Deb.
For those that seem to “get it”, I emphasize that it is CHRONIC and varies from day to day usually; much like the swinging of a pendulum; it doesn’t go away, but it can improve with treatment.
DavidBod [I added here – A GP of 36 years’ experience until acquired CIDP. Also renal failure.]
I agree with Deb and Sue, I say it is like MS. I try the multi-core electric wire analogy with some, but I am not sure whether folk have any concept of the nerves supplying sensation and muscle movement.
Many people think ‘nerves’ are something to do with worry and anxiety. I cannot be sure on this one, having been imbued with the anatomy and physiology of the nervous system from teens to retirement. Do you think people other than us, understand ‘peripheral nerves’? David
I try to refrain from saying “I have a nervous system disorder” since that sounds a lot like a “nervous breakdown!” of some sort to many.
Autoimmune disorder (I like “disorder better than disease) seems to work well; most can relate to that e.g. arthritis is an auto-immune condition.
I caution that I do not walk this way or tremble because I have a drinking problem…I wonder just how many of “the family” secretly wonder about this? Although, sometimes it does sound like a good idea…
Location: Long Island, New York
I guess I’ve passed the point where people will ask, because they don’t anymore! I try to explain so that a child would understand too! I’d tell the person that we all have an ARMY inside our bodies that protects us from attacks by the bad guys. The ARMY is called the IMMUNE SYSTEM. And we have messengers or MAILMEN that run up and down the body to tell our arms and legs what to do. The MAILMEN are called the NERVOUS SYSTEM. One day the ARMY made a mistake and thought that the GOOD GUYS were the BAD GUYS. So some GOOD GUYS who were MAILMEN got zapped and were hurt and they can’t tell our arms and legs what to do until they get better.
I have used most explanations offered but confusion still remains and lack of real interest. It’s like you have 5 seconds to grab someone’s attention before it moves on. What I say now is that I have an Autoimmune disease which scrambles the messages from my brain to my muscles – the electrical messages leak out of my nervous system because the lining is eaten away in places and its like getting electrical shocks all over my body.
It doesn’t have the same impact as when you tell them you won a million dollars and you are going to share it with them does it?
When other people are in pain they wince have you noticed that? When we are in pain we just sit there like dummies, I know I do, I’m just enduring it unless it’s one of those electrical jolts or sharp pains that make you cry out or jump. What we have forgotten to do is wince; we should practice our wincing so we can be more convincing. Right?
I think this thread is a good idea we really do need a simple but convincing explanation.
Lib Windram. Scotland.
My simple explanation to my condition is to say that it similar to MS and my antibodies are destroying the myelin insulation around my motor and sensory nerves, and as a result, I’m like a robot that is short circuiting. The messages just aren’t getting through properly to my muscles. The reason that I walk so strangely, and tire so quickly, is due to the fact that only parts of my muscles are getting the message from my brain, and they get fed up with doing all the work. It’s like walking with a building block tied to each foot.
NOW PLEASE ADD YOUR OWN!:p
AnonymousJuly 26, 2006 at 11:55 am
Hello: Ryan here. getting people to understand neuropathy is very difficult if not impossible. It also hurts when they can’t get it in their head that you can’t do the things you use to do due to the lack of strength and the pain. What I have found is that you have to come up with a half page of information. any thing else will hit the trash can without being really read. look down the list on this page for the post ” my partners don’t understand”. There are two posts from me in there, the one you want is the second post from me. check it out . it is short and to the general point.
AnonymousJuly 26, 2006 at 12:21 pm
I just want to say that this is an excellent thread. The other day, my husband was trying to explain it to his parents and it struck me how BADLY he did it! I’m new to this and explaining it to seemingly everybody I know, and my message is almost exactly like some of those posted above. I always start with autoimmune part (everyone gets this concept) and then get to myelin sheaths with the electrical wire analogy, and then go to the IVIG treatment explanation (antibodies from thousands of people, blah blah blah). I tend to avoid the MS comparisons because its too scary — I’m surprised that people go there!
AnonymousJuly 26, 2006 at 2:17 pm
Usually when someone first asks about what has happened to my daughter, I give them a 10 second sound bite. That’s all that’s needed to determine if they are genuinely concerned. I quickly came to realize that many people only ask to be polite, some ask out of curiosity, and then there are those who have a compassion for our family. The first response after my sound bite reveals their level of involvement, and at that point, we either move on to other topics, or then I will allow them to ask all the technical questions they want. This is also the best opportunity I can think of to remind people to donate blood – and if I see that they “get” the message, I go on to further educate them that donating plasma (as opposed to just donating blood) is especially appreciated by those of us who have this disorder.
My Sound Bite: “A rare crippling disorder where the immune system attacks the body.”
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