I do not have an obligation to tell someone of Bruce's illness. But I do. My feeling is that the more you stop talking about a situation, the more it becomes uncomfortable. If it is talked about, the child and the family accepts it (because you have to) and it becomes a part of the family. Bruce has a good attitude based on our openness of his illness. At first I felt that I was wearing my feelings on my coat sleeve. I told everyone. It was therapy for me. Maybe by opening up it was helping to sink in. Deep down I knew Bruce's illness wasn't going away. Its not that I wasn't thinking positive, but God gave me a brain to use. Don't think I didn't have a few choice words with the big guy. I needed His help. I needed to breathe but I couldn't. Every time I came up for air, I would get pulled down. Bruce's illness consumed me and I had no choice but to be consumed. We associate Arthritis with older adults, not a child. I had never thought of it before Bruce got JA. I knew it existed. I just didn't pay a lot of attention to it. To parents and people who do not have a child with a chronic illness its hard to understand. Its very hard on the parents who do have a child with JA or another chronic illness. You have to first educate yourself and then your spouse, child and family and then the people you associate with. The responsibility is overwhelming. When Bruce was going through the first couple of months and not getting any better, my duty was to protect and help. But how. Labs, testing, doctors, all showed that he had nothing. He was called a fake. Its not easy to hear that. They were not at home with him every day and night. They didn't see Bruce try to get out of bed in the mornings only to fall on the floor. They didn't see him cry at night due to the pain. He didn't understand what was happening to him. He was depressed. I was so angry. That anger was bottled up and put to good use. I was going to find out what he had but I felt that I couldn't get any help. Its not easy to take on this responsibility but you do. You keep searching till you get some answers. My husband was my sounding board. He left me in charge. He trusted me. Bruce Sr. never bucked me once and he followed my lead. That I am thankful for. On those days that I didn't have the strength, Bruce Sr. took over.
During this time I educated friends on JA. They would see me at the park or in the grocery store. Sometimes Bruce would be walking, sometimes in a wheelchair and sometimes he would be sitting in the back of the cart at the store. I don't think they knew how bad it got. On the outside he looks well (unless in pain). That didn't mean he didn't have a flare or joint contractures or exhaustion. If you don't see a child sick its kind of like the old saying "out of Sight out of Mind".
Since I home school my kids, I didn't have to go through the school process of trying to make teachers, principals, and guidance counselors understand. I did have to explain to coaches that were a part of his life. He wasn't doing gymnastics anymore. His tennis coach understood, she has Osteoarthritis. Bruce stopped going do to the impact on his legs. Bruce's coach would call me at least once a week to see how he was doing. Golf was a sport that he continued to play. We ended up changing golf coaches. The one he had didn't understand. Didn't understand because he couldn't see the illness. He did see Bruce's frustration and thought he was a hot head. What he didn't understand was Bruce's mind was telling him that he could do it but his body was saying something else. During this time Bruce was on Methotrextate and it wasn't doing enough so his body was constantly in fight mode. He was tired and weak but still wanted to play golf. There were times that kids didn't understand either. One boy on the golf course said "Hey, you let your mom carry your clubs". We were lucky that he could pick up his driver. I felt bad for him. The one thing he loved to do and he was getting picked on. He was silent. I had a little meeting with some parents right after that at the golf course. I explained. They asked a lot of questions. They apologized. I don't want an apology I told them. When your kid sees him sitting in the golf cart hes not lazy. He cant stand for long periods. Hes out there for about a half hour and hes pretty much wiped out for the rest of the day. He cant pick his bag up. Its too heavy. The next time Bruce was out there on the course he had a new golf coach and the kids were very helpful and understanding. I also told Bruce to speak up about his Arthritis. Own It. Its yours. People are going to ask questions. He said he wanted to tell kids. Do not be ashamed when you sit out, take a break or even quit. Know your limits and how far to push yourself. Pace yourself. Its a lot to ask of a 9 year old. But he pulled through. I heard him tell kids that he has Arthritis. Do you know that one time some kids did a different activity so Bruce could be a part of it? It was incredible to watch. I was so thankful that it turned out that way. It made Bruce more confident and to be himself.