Telling Your Children that You have Autoimmune Arthritis

by Bridget Seritt

When I gave birth to my first child, I had already been diagnosed with Rheumatoid Arthritis for 3 years. Unfortunately, childbirth caused the illness to compound with 2 more autoimmunes and consequently caused a lot of physical and mental damage. My children have always grew up knowing that Mommy limped and could not do what other people did. Now that they are grown, I asked them how they dealt with my RA and what I could have done differently. Here’s what they said.

Very young children won’t be able to understand the technical reasons that you feel bad or can’t walk, so answer don’t bombard them with needless information. Young children are better being allowed to ask the questions and have their parent give them good, honest answers. Don’t apologise for being sick, nor try to hide it. When you do those things, you insinuate that being sick is wrong and plants those seeds of prejudice. To raise a truly empathetic child, be honest with them on their terms. Use analogies they can understand and allow them to ask any questions about your illness with out being reprimanded.

As your children get older, they will notice more and be able to comprehend some of the more technical reasons you are sick. My oldest said this, “I didn’t understand until about 11. Knew you were sick but I just didn’t understand until then.” She said at that point, she realized it was a disease and not something normal. By concentrating on the times I could do things, it helped her cope with the times I could not get out of bed. Being scared was also a huge part of living with a parent who has an autoimmune disease. Some of the fears she had to cope with are: dealing with my premature death, getting the illness herself, and being judged by other children who had normal Moms. Counseling and a good peer network helped her go on to live a very happy, productive life. Though she said it will always be heartbreaking to see me sick, she loved the healthy times that much more because of it. Her advice is to be honest with your children, even if it means telling them you will die sooner. By doing that, you give them something to grieve about, something to seek help about, and often times a cause to fight for in the future.