So this question my seem odd. Our kids have been on their annual summer vaction/ visit at the grandparents house in another state for all most a month and half, and thankfully are coming back home late this week (Hooray!!!) I never told either of the kids how sick I was, even when the TN got really bad this last spring thru early summer before they left. The only thing that we told the kids is mommy is sick and that was it. Now my older daughter was worried about me before they left. My sweet little mini me’s are 12 years old and 3 1/2 years old (they both look exactly like me but have their dads personality). I need to explain what is wrong with me to both of them in seperate ways. I’m just not sure how to do it. Does anybody have suggestions on how to tell kids you’re sick without making them worry more. Which is the last thing I want to lead them to. I know we need to explain to them what is going on with me, but I’m just not sure how to tell them. Help please. Thank you
Hi Kari
Haven’t been in this situation myself; but I think it is best to always focus on the positives. This condition is certainly life altering but, thankfully, not in itself life threatening, I say this with the true sense of the word in mind - ‘suicide disease’ is an old nickname used by sufferers before there was recognition of this condition, medications, surgery and support groups like this! I know that the pain certainly feels like the end but remember there are many people worse off suffering from terminal illness - and they still manage to smile and focus positively on life. We should try to do the same. Albeit it isn’t easy - I often feel like giving in and ‘disappearing’, it is a hard road and there is no magical cure BUT it can be managed and there is help out there. New ways to medicate and surgically remedy this condition are being discovered all the time.
Your little ones may not comprehend words like Trigeminal Neuralgia but they may understand words like headache, nerves, pressure, burning etc… instead? You could show them how it hurts by putting your hands (gently) on their faces/head and applying pressure and explain that Mum feels really bad pain and sometimes may cry or look a bit scary when the pain hurts but not to be scared, Mummy isn’t going anywhere. Tell them that they can help Mummy when she is in pain by being quiet, getting her a drink of water, a pillow etc etc. so they feel like they are helping you.
When we are in this god awful pain it is hard enough for our adult loved ones to see, let alone children!
Focus on the bright side, the positives and how they can help - it may make them less scared and will make them feel like they were helping Mummy!
As I said I’m not in this position myself and the above is just a few ideas on how I think I would handle this situation.
You’ve found a good pool of people to float this question to.
Tell me how you go… I wish you the very best of luck! Steph 
Steph has some great ideas
I'm about 10 years in and my kids are 17 & 18 now so I can relate to your 12 year old. When I was first diagnosed I didn't want them to think it was too serious - and I didn't have it as bad as all the wiki definitions described so I played it off and made a joke about it - I told them they got on my last nerve and broke it. It became the joke of the house, but as I got worse over the years, I did not relate that to them.
About 2 years ago they tried to have an 'intervention' with me because they thought I was depressed, etc. I was just on the wrong meds and was sleeping all the time. I had to finally tell them how bad it was and how serious the drugs were that I was on.
Mistakes I made - As my kids matured, I did not update their undertstanding of TN and what my drugs do to me. While I tried to regain control of TN and the drugs, I let TN rule me and in turn, the whole house. The kids began to resent TN and me. I finally realized this when one day I said "I'm sick" and I got a "You're always sick" answer, and of course their attempt at my depression intervention (at least they truly cared)
Things I did ok - I (finally) gave the kids age appropriate disclosure. Immediately less resentment. More understanding of why I couldn't always participate. There is still some resentment, but I think that comes with any chronic illness in the family. I also try my best to not let TN rule the house. I come to this site often, but I do it in private away from them. TN is there 100% of the time for me, but I try not to let it be there all the time for them when I can help it.
I think the most important things you can do is make them part of your journey. Keep it age appropriate. As much as you can help it, allow TN into your family, but don't let TN get in the way of your relationship with them.
My journey might not be the same as yours but I hope you can learn from my mistakes
Elaine
Also try to find out first what THEY want to know, I am sometimes guilty of giving out too much information when they just want a simple question answered. I am not suggesting that you are doing this but only that my youngest has said, “TMI” to me on a couple of occasions.
TL said:
Also try to find out first what THEY want to know, I am sometimes guilty of giving out too much information when they just want a simple question answered.
If you go to google images - while they are not around
You will find some picts that might help explain -- drawings of the face and the nerves
Your explanaitions of course would be different for each mini me - because of their age difference
Simpler for the younger one -- and always welcome questions --- more side effect med info for the older one - what your options are
And tell them about all the wonderful people helping you from all over the world here!!!!
I think it's most important to say that you're not going to die. When they get older, and can read all that "suicide disease" stuff for themselves, I think it's very important to say that you plan to stick around for them. No kid wants to see their parent suffer, or have a parent with a chronic health problem, but mostly they want their parents to be around for them.