Have any of you had good experience explaining our illness to your children? I have a 10 year old daughter who’s very sensitive and worries about everything. Since my fibro has been in overdrive the last several months I tend to hide in my bedroom on my bad days because I don’t want her to see how sick I am, and we all know that we tend to be short, grumpy etc when we don’t feel well. But it’s getting to the point that I can’t hide anymore and I’m trying to think of a good way to approach her with it. We’ve just dealt with the loss of both my mother & father in law & my grandfather within the last 6 months so she even more sensitive right now with those being the first close relatives shes lost in her short life. She knows that I have a sickness and i go to pt and aqua therapy but that’s about all she knows as of now and it’s time she can ununderstand some more. She’s not dumb, and has to wonder why daddy is always in his room. So if anyone has advice, experience, anything I’d greatly appreciate it. Thanks Ray
Hi Ray, I also have a 10 year old daughter, it is a fun age. While I have had Fibro since before she was born, I didn't tell her about it until last summer. Like you, I was unsure how to approach the subject. I just finally sat down with her and explained more of why mommy sometimes is grumpy and yelps when she touches me. I explained that Fibro is NOT contagious (she was worried she would get it). I explained that mommy sometimes is really sore and doesn't like to be touched. I explained how the muscles tighten up and about nerve pain that I get. She was curious and overall took it pretty well. She is 10 going on 16 (lol) and loves the internet - I showed her a few of the posts on here that I thought she could learn / understand. She does pretty well most of the time with understanding my pain levels. I think the most important thing that I did and continue to do is reassure her that I might not be feeling good but I am "okay." I am not going to die from this, it is not contagious, etc. Please keep us updated on how it goes - I am sure you are a great dad and you will find a way to talk to your daughter about this. Hugs. Michelle
hi Ray,
I raised my children while in bed most of the time. They get more scared when you hide or seclude yourself. I had an open door policy so the kids could come talk to me anytime, and we would play games and read stories on the bed. I told them everywhere on my body hurts like its broken, and some days are a bit better and some days are a bit worse. Some days I can do some things and some days i can't. So soon they started asking 'Do you feel good enough to ____"? I'd say yes or no or make a compromise, I can do this part but I have to sit down...or whatever it is. tell her it won't kill you but it makes everything very hard to do. She's probably scared silly that you might be dying. Keep a light on, even if its just the low level of a 3 way lamp, and try to make your room a happy place as much as you can. Put up funny posters that make fun of pain. Things like this. Just print them off.
I find tons on Facebook Fibro groups. There are tons in this group's pictures too. Look through my pictures.
Best wishes to you!
Sheila
Hi Ray- I was also a single parent when my wife left, and my daughters were 18, 16, 14, and 12. And the 12 and 14 year olds are very close to me to this day. They always worked with me and asked how I was doing with the Fibro.
I think the most important thing to do is tell her the exact truth about your (our) illness. Keeping her in the dark will only make her worry that you have some serious illness and that you might be the next to pass away. Obviously the 1 thing we know about Fibro is that it will not kill us, just slow us down. Once she hears that I am quite sure that she will feel a lot better. Also, it will give her a sense of purpose, as she will likely want to help you out a little when you have issues. Not in a major way, but it will make her feel that she is a big help. I can tell you that the 2 of you will immediately become closer and bonded once you tell her the truth.
Mike
First I would be extremely careful in explains your illness to a young child UNLESS you are absolutely confident that you have been correctly diagnosed with fibro. I can tell you this from personal experience having a had an autoimmune disease for over 10 years and am still not know if it is diagnosed correctly. For instance with fibro while you can have terrible joint and muscle pains and there is no deterioration of the muscles there are other diseases that have the same symptoms that do result in wasting muscles and joint cartlidge. I have heard of patients that have been diagnosed with fibro only to find out years later they have lupus, or infectious arthritis or a host of other diseases. On this site it would be extremely helpful if an expert with long time experience in fibro would write a step by test testing regimen to elimimate some other illnesses and arrive at the only one left fibromyalgia. In any case good luck.
i have been told for the most part, if they are old enough to ask they are old enough to understand. this is so hard to explain to older adults. if it were me i probably would let her know first even though it is hard to function, it is not something you will die from. i just typed in the question of how to explain fibromyalgia to children and got this http://www.cortjohnson.org/blog/2014/11/27/many-marbles-childrens-book-chronic-fatigue-syndrome-fibromyalgia/
it looks like a good resource. hope it helps.
Hero1939 said:
First I would be extremely careful in explaining your illness to a young child UNLESS you are absolutely confident that you have been correctly diagnosed with fibro. I can tell you this from personal experience having a had an autoimmune disease for over 10 years and am still not know if it is diagnosed correctly. For instance with fibro while you can have terrible joint and muscle pains and there is no deterioration of the muscles there are other diseases that have the same symptoms that do result in wasting muscles and joint cartlidge. I have heard of patients that have been diagnosed with fibro only to find out years later they have lupus, or infectious arthritis or a host of other diseases. On this site it would be extremely helpful if an expert Doctor with long time experience in fibro would write a step by test testing regimen to elimimate some other illnesses and arrive at the only one left fibromyalgia. In any case good luck.
bluefeatherrose said:
i have been told for the most part, if they are old enough to ask they are old enough to understand. this is so hard to explain to older adults. if it were me i probably would let her know first even though it is hard to function, it is not something you will die from. i just typed in the question of how to explain fibromyalgia to children and got this http://www.cortjohnson.org/blog/2014/11/27/many-marbles-childrens-b...
it looks like a good resource. hope it helps.
How Many Marbles Do YOU Have?: Helping Children Understand The limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia Paperback – November 7, 2014
by Melinda Malott (Author)
hummm... maybe i will check it out here. See all 2 formats and editions
- Kindle
$3.03Read with our free app- Paperback
$13.382 Used from $11.2710 New from $8.89
First I would like to extend my condolences to you on your family losses. How very sad.
When my grand-daughter was 12yrs and oft times asking me 'why' are you hurting so much all the time Nana...I decided that since kids of this age are quite computer literate that I would let her watch a video about Fibromyalgia. There are so many on the iNet and it's relatively easy to choose which ones are the most informative & appropriate for young people to view.
Of course I explained that I had Fibromyalgia first...then had her watch the video..actually 2 different ones. That was the best thing I've ever done to help her understand WHY 'nana hurts so much & is often in bed'. She watched the video at least 3 times and has an excellent grasp of my/the condition now & is eager to help me out with various household chores.
I hope 'my experience' is of some help to you Ray or at least a suggestion worth considering.
Gentle Hugs,
Geranium
Thanks to everyone for your input thus far, you have all given some great advice and ideas. Being the parent of a child my daughters age and goin from a normal working, active, busy life to not working and sick all the time in a little less than 3 years is tough, so the help from all of you is wonderful.
Hi Ray. My daughter was ten when I was diagnosed. At first she could not sit in my lap or even hug me without being told “sorry honey it hurts too much”. The most important thing I would suggest is that there is hope that you will get better. Of course it doesn’t go away, but with a more comprehensive medical and phy therapy regimen I am so much better than I could have hoped for. Every day brings pain but it isn’t as bad as it used to be. Don’t forget to hope - maybe someday there will be a cure. Let your child have that hope to hold onto as well. -AMP
Hi Ray. I am sorry for all y’all have been going through lately. I have a 10 yo son who is also very sensitive. We lost my Step-father (although I like to think of him as my second dad…in which my first dad passed in 2001) in June 2014 unexpectingly. This was my son’s rememberance of any Grandfather and his first experience with a loss of a family member (other than a pet). I noticed he was having some issues and he would come to me and tell me that he felt sad but he couldn’t elaborate much when I would question him as to why. After several times with this I had an idea it may have to do with the loss of his grandfather. Anyway, long story short I took him to a counselor to see if it would help and she was able to get out of him that he was afraid me or someoe else in the family would die o even himself since he had been having GI and heart issues. Please let your ba y know you may have bad days but you do not plan on going anywhere. I would advise to consider a counselor for your precious baby. Sometimes counselors have ways to help kids express what tbey are feeling and help them work through their fears. They can also help give you pointers on how to handle things. My son has been about 3 times (my mind is mush and I can’t remember). There is already much improvement. Just having your daughter expressing how she is feeling can help the situation so much. Now I know that I did not advise on how to tell her what is going on with you but I see that others have. Please talk with her asap to help her little heart rest her anxieties. I wish much peace and comfort to you and your family.
Hello, I just learned about this book, I haven't read it but thought I would post this as a resource. http://www.fmcpaware.org/why-does-mommy-hurt.html. I hope you are doing well.