Parent-Child Relationships (since it is a hot topic!)

Parent-Child Relationships (since it is a hot topic!)

I have been reading the responses regarding how children of RA patients cope with the disability and felt the need to share my experience. My son is almost 16 and hasn't known a time when I haven't been in pain. My RA symptoms hit me like a light-switch - went to bed fine and overnight my body rebelled and was hardly able to move a few hours later. This date was October 18, 1995 - a month after having my son.

As I was unable to exert too much energy, we, as a family, had to decide how to provide him a child's life without having it burdens with all the aspects of disease. Sebastian was able to stay with family when I was able to work which provided him someone to be more physical with. While my husband was the "fun" one with the rough-housing, I was the calmer down with board games, cards, drawing - more relaxed fun. We never sheltered Sebastian from doctor appointments; in fact, he often came with me (still does) and became comfortable with what was going on (Mom wasn't going to die!) and didn't feel weird about the medical lingo. Mind you, he never has known what having a normal mother is like, but I never thought he missed out. I only missed one football game due to a flare! Gosh, that was a bad one!

I think my problems prepared him for his father's eventual diagnosis of multiple sclerosis and his own diagnosis of insulin-dependent diabetes at age 10. Sebastian, at an earlier age, learned to be self-sufficient and to be an advocate for himself. He also learned how to weed out bad doctors ;) Despite my limitations, he has also seen me rise above RA.

Of course, this is a lot of I THINKS - so I asked him, "Do you think that my health issues held you back at all?" Sebastian said that he always felt loved and supported, got to do things he wanted to do, and never felt punished or restricted. In our family, due to RA we have more clearly defined roles, and he is fine with that. And looking back to his younger years, I don't have the impression that he has ever felt any differently. If I was having "an in bed day" he would watch TV with me, we would talk, read, and/or play games.

However, and this bears repeating - this is all Sebastian has ever known. There was never a mourning period for the mother he used to know. Now my husband...well that is another story :) He knew me three years prior to my RA and still has difficulty coming to terms with it. And now that all three of us have an autoimmune illness the husband goes through periods of "What the heck did we do to deserve this?" I feel that same way from time to time, but you can't let it ruin your day. It is what it is...

5 Replies

Mercedes that was very well said. My children have never know me not to have diabetes and just take it in there stride (as do i) and i think children are very resilliant. Since having RA (6 months) my little one who is 3 has just got on with it plays around me if mummy needs a rest and makes up for it when daddy takes her to the park. At the end of the day so long as the children are cared for and loved then they have alot more than some children do. Jules x


I think that all us mums, dads, grandmas and grandpas etc deserve a jolly good pat on the back for being so resilient ourselves! :)


Hi Mercedes,what a time you have all had. Hope your hubby's MS is in remission. Sebastian sounds a lovely son and very sensible and clearly has had a brilliant upbringing. Obviously thanks to his parents. You will have seen the other blogs I expect about children with parents who have RA - I think children are perfectly capable of understanding most things if explained to them simply and of course, they love being asked to help if mum is not feeling too good. My little grand daughter who is 6 will sit by me and give me a cuddle and then asks if I feel better as a result. The answer of course, is always yes. LavendarLady xx


strong lady and you must be so proud of your son x


Hi there I've only just read your blogg as I've been off the site for a while, it was infact like reading one of my own. Your words as I read them were like my own has I too have a 16 year old son who has never known me any different either has I was diagnosed shortly after having him but had a terrible time through pregnancy.

Life as been difficult but we also never sheltered him from hospitals etc, all of the nurses now him by name and always ask after him. They even helped me when I was admitted so many times by feeding and changing nappies etc.I think we are the ones who sometimes feel guilty that they have missed out. when we ask him he doesn't seem to feel any different because of the RA it just seems to be my guilt. Like your hubby mine too was affected more.

That's a long time ago now and we have to get on with life and make the most of what we do have, it's certainly not fair.

Your right it is what it is.

Take care

mand xx


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