In the next few months, my oldest child will turn 20 and my youngest, 18. It’s an exciting time with young adults in the house. I feel fortunate that my diagnosis of rheumatoid arthritis (RA) came after pregnancy, infancy and toddler-hood. However, at 6 and 8 years old, my children were given a quick lesson on what it’s like to see Mom develop and figure out a chronic illness.
- I explained in simple terms that my joints hurt, and they both needed to be careful with me, giving specific examples.
- I let them ask as many questions as they wanted, and I answered them as honestly as I could.
- My children were old enough at my diagnosis to know the difference between how I felt before and how I was feeling at the time. I was asked if I was going to die—the worst question a mother can hear from a young child. I felt confident assuring them this was not something they should be concerned with.
- I shared that some days would be better than others, and I didn’t know for sure what was going to happen. But I told them that I would always be the best momma I could be. That was reassurance enough for them.
- I planned naps into my day, especially days I worked in the evening. I was lucky that my kids always stayed close by while I slept.
- On days that a nap wasn’t possible, I planned quiet time into our day. The kids and I would lay in bed, snuggled up watching a TV show or reading a book together.
- I learned to ask for help from others. This was hard at first, but with a little practice, it got easier. I asked my husband for more help around the house or to pick up groceries on his way home. My sister even cleaned out my refrigerator when she was visiting from out of town.
I have been very fortunate that my family has always been very close. My husband has always made the kids and me a priority. I remember many evenings when he would play with the kids so that I could sneak away to soak in the tub. On the weekends, he would offer to take the kids out so I could rest. My husband and kids have honored my need for alone time when I am experiencing a flare. They are there for me, but also respect that sometimes I need time to cry it out.
In addition to helping my family find ways to help me, I’ve also learned how to care for myself in the following ways:
- I keep my schedule simple.
- I plan ahead for home and school so if a flare occurs, it doesn’t feel like the end of the world..
- If I am flaring, I drop everything I can and focus on myself.
- I remind myself that rheumatoid arthritis is like a thunderstorm. When it is active, it is strong and scary, but the calm always comes.
- I incorporate things I can look forward to into my day such as a chocolate bar, a quiet walk or a movie with the family.
- I found a rheumatologist that I feel compatible with and don’t hesitate to tell her if I feel I need more attention. If I could go back and redo one thing from my RA journey, it would be to find a rheumatologist I was more compatible with from the beginning. Rheumatoid arthritis is not a disease to take lightly. The first years are lonely. You don’t understand the pain or the feelings of inadequacy that can come with the physical limitations. Until I found a rheumatologist I clicked with, I wasn’t a strong advocate for myself. I needed a support system outside of my family to discuss the tough job of being a mom with an autoimmune disease. Despite having a wonderful family, I often found myself alone in the shower hyperventilating. I wish I had shared the need to either see a therapist who specialized in chronic illness to discuss these feelings or asked if my rheumy knew of other patients I could talk to. Several years after my diagnosis, my naturopath set up a meeting between a newly diagnosed patient and myself. I remember feeling such relief in knowing I wasn’t crazy for having the feelings I had. I also would have asked for physical therapy early on. Once I hooked up with my current rheumatologist, she recommended it immediately.
It took a long time, but I now have more good days than bad. My daughter mentioned one day that she sometimes forgets that I have RA. That’s an awesome feeling. My pain and limitations are no longer the focus of our family life. While my daughter says she sometimes forgets, I believe that compassion for others became a part of both of my children’s personalities as they were growing up.While life would have been easier without a mom with RA, I feel that it has helped my children to look beyond what they see in a person to what else might be going on. Plus, they are both proud of me. They have mentioned many times how amazing I am. They have grown up watching their mother deal with a chronic illness. They saw that despite the pain and fear I often experienced, I lived up to the promise I made to them that I would always be the best momma I could be. I lived up to that promise plus so much more. I made my kids proud of me as a person.