How to tell your children?

[MCE]

I have 3 children, ages 13, 10 and 3. How do I explain this illness to them so that they understand?

They are pretty independent kids and help out alot around the house and with their baby brother but how do I explain that mommy is different?

I haven't been able to take them anywhere for the past 5 months. No malls, restaurants or anything fun because I've been so sick. Well they come home from grandma's house this weekend and I don't know how to tell them.

[Joe S.]

Mom is very sick and will be for the rest of her life. I can not do a lot of things any more that I used to and I will need all of the help that you can give me.

As a dad I gave a similar speech to my two girls. The oldest one understood. The youngest did not. They helped with meals, dishes, and cleaning. I helped with homework as they asked. I had a room in the basement of our home that I kept dark and warm. When I was first sick the migraines were so bad that I spent weeks and months in the basement and they had to be quiet.

As time went on, I got better at managing my pain and my triggers and we could do more. Management is the key to ho well you will preform and how good your time with them will be.

[MCE]

Thank you Joe. I appreciate the response.

[quietdynamics]

MCE...most likely the 10 and 13 yr old know something is off with Mom.
I would have a pre sit down with Dad and then have a talk with Dad and the older children.
I likened it to the the flu since that was something they could relate to.. the feeling ill, weak, body aches.

I would include telling them that them that Dr. is trying to manage the symptoms. And that you really appreciate their help, it really means a lot to you.

Summers are very difficult with children and wanting to do all the thing you used to. If there is a community pool it was better for me to join. The kids got to be with their friends and I had a shade spot ( and home stayed tidy..lol) I made sandwiches and brought them. You may find the 3 yr old will even take a nap for you.. and pools have showers so that is done as well. Just a suggestion.  I actually feel better being out of the home.

[irish]

I was under the weather from my undiagnosed autoimmune disease for all of my childrens lives. My health went up and down and I never knew from one minute to the next when I would end up on the couch "resting" as I called it. I went to the doctor a lot.

I never told my kids what was wrong. They would not have understood and I figured they didn't need the burden. There were times when I felt like I could die from fatigue, etc aching etc but I would just tell them that my body would just feel sick and I had to rest. I doubt that I was as bad as you feel a lot of the time, but my life was impacted by it. My hubby had to take off work one time for a week as I had a flare with fever and so many other issue that I slept for a week and lost 10 pounds. The doctors had no clue what was wrong.

I had diarrhea for 4 months one time without a diagnosis....I just went from one thing to the next and spent a lot of time laying down. I would plan my washing, cooking, etc much of the time around these issues. The good thing is I didn't stay like that. MY last pregnancy was a nightmare and my mother in law told me later that she didn't think I would live through the pregnancy and delivery. The pain got to me but a person just does what they can and when they can.

I don't know if you have tried plaquenil but that may help you. I have taken it for quite a few years and get my eyes checked on a routine basis with all the in depth testing needed. This med helps the pain and aching and fatigue. Sometimes we think it isn't working but just try having to stop it for a few months and you will find out how many aches and pains return.

Find a good family doctor or internist that will listen to you and treat your symptoms. Sjogrens can make you miserable in many ways but usually with the help of plaquenil and prednisone when needed a person can improve enough to have a better life. Also, keep trying to find a doctor who will try to identify if there is some other autoimmune affecting you. Make sure to get your thyroid checked. An underactive thyroid can affect your body is many ways and pain and aching/fatigue is among the issues. Good luck. Irish

[Skylar]

I was like Irish, undiagnosed when mine were younger. I was diagnosed first with Multiple Sclerosis which devastated me. DH and I kept that a secret both at work and from the kids. I did tell them when they were in their 20's - they knew I had health issues, just no names put to it. When they became adults and moved out on their own I felt it was important for their health records that they could tell their PCP their family history in case it impacted their own treatment.

I never felt the need to explain that I was different - it was always mom's not well today. If you look around you'll see lots of reasons why parents don't do things with their kids - maybe they are workaholics, or alcoholics or not interested. Don't feel guilty and look for ways to have fun that you can handle. 

[MCE]

I decided to tell my daughter. She's 13 and kept asking me to go to the mall today. I felt she understood, I simplified it as best as possible. She said she's glad it's not cancer..  I started plaquenil last week so I'm praying it works. Thanks everyone for your advice.