This is one I keep wanting to write but its something I struggle with so much that I end up not publishing. I don’t feel qualified to even suggest how to on this subject. So I have just kicked this post around a few times a month for several months. I read and read and read about it. The actual sitting down having a conversation, not so much.
For the most part I try to find teachable moments. She had a cold and said her muscles hurt all over. This was a good segway to talk about fibromyalgia. Although I don’t think she fully understood, I do think it helped her understand why sometimes I don’t want to be touched.
I have many vitamin deficiencies. I have mostly blown off as it is just something my body does not do properly so I need medicine for it.
When she asks why the medicine does not just fix it I have explained it this way. IF you drop a plate and glue it back together you have to wait for the glue to dry. The glue can’t get hot or it could fall apart again. This seemed to help her understand why medicine just didn’t fix me.
My heart issues are fairly well controlled with medication now so it has not really come up. When she was younger and I had to wear the halter monitor she really wasn’t interested in it. Part of the reason I was so determined to go off so many of the script meds was related to my heart. I had an issue and had to go to the ER a few months before I went off my meds. She was kind of worried about it but once I told her the Doctors said my heart was fine she was okay with that.
I think for the most part the best advice I can give is to use teachable moments. This helps them relate to the information the most. It is not a conversation I felt ready or capable of having soon after a diagnosis. I needed months if not years to process the information myself. I still have not sat her down and told her everything that is going on with me. I really don’t think they need to know that much. She knows I have a heart issue and take medications for it. My main concern was if I am with her and something happens, she is old enough to relay information. This is not to say I don’t have the information readily available. On my more anxious days, I can think of seventy five million situations where she would at least need to be able to tell the rescue people some kind of information. She literally knows I have SVT heart issue and take medication for it. She does not necessarily need to know the medications or the exact type of SVT. The only reason she even knows that is because it is the most vital.
So there is that. I hope someone finds it helpful as it is probably my most requested subject.