Children are very observant and they notice every single thing. They know when something is not right and they know when we are not well. They can sense it whether we try to fake it or not. My son always knows even when I try to hide it from him because he says he can tell from the sound of my voice that I do not feel good. He will say, “Your voice sounds tired, Mom. You’re having a bad fatigue day, aren’t you?”
I have found that over the years my son has grown to fear my ME/CFS & Fibromyalgia flares as much as I do as a patient. This is what I mean by “fear”. We are planning a Disney cruise in June and he is excited. But everytime he talks about the cruise, he says he’s afraid that something will happen that I will be too sick to go. I keep reassuring him that I will be going on the cruise regardless of what I feel like because of how important this trip is to our family. This is a once in a lifetime trip that I have to be able to do. He says, “But what if you’re too exhausted from your sickness? What if you can’t get around?” I told him that even if his daddy has to push me around in a wheelchair on the ship if something happens I’m too exhausted to walk, WE ARE GOING!
I can tell that he is really excited to go, but yet I can tell that he has already prepared himself for the unpredictability of CFS & FM because that is all he has ever known. We have had to cancel outings, parties, and things he has looked forward to doing because I physically couldn’t do it.
This is all he has ever known, so the one blessing in being sick for so long is that he never knew me healthy and didn’t have to make that adjustment – that would be extremely difficult. This life for him still isn’t easy because my husband and I both have health problems, but this is how it has always been so he has never known another life but this one.
I can see fear in his eyes the longer a flare lasts. He has told me that he is afraid that one of these times during a flare that I will die – he has the same thoughts as my husband, but I know my husband has never shared those thoughts with him. Our families see us at our absolute worst, which most people do not, and it is hard for a lot of people on the outside to fathom just how sick we can get. But our families see it and for the ones who are supportive, it is scary. We know we aren’t going to die, even though we feel like it, but the fear is still there for our loved ones.
As a flare progresses, I will notice him clinging to me more and more. He will want to be by my side, regardless of whether I can do anything with him or not. That is when I know that the flare is really getting to him because it is unusual for him to just want to be still without doing nothing at all. He is usually always into something.
Hopefully, he will grow up with compassion for others who are sick and will have empathy and understanding since this is all he has known at home. I guess it could go either way. It could also make him resentful of me and of anyone who is chronically ill. I hope not. I hope it doesn’t scar him emotionally.
I would love to hear from those of you with children and how your children respond to your illnesses.