Betty: Learning to be her own advocate

While we are preparing for the BlogHer Special Need Mini-Con, we are going to rerun several of our articles that have run over the past 15 months. We’re hear still, so let us know if you need anything.

—–

It is before my son is on dialysis. In fact, it’s before I can fathom that my son will ever be on dialysis. I am sitting in a conference room and listening to a teenager talk about her experience with ARPKD — the same disease that my kids have. She talks about the symptoms and how they make her feel. I listen intently while she explains that in school, she’ll raise her hand and by the time it’s her turn to answer the thought she was going to share is gone. I replayed that conversation over the years as I tried to understand my kids’ kidney failure and the impact on their learning.

Thanks to Betty I understood more. When I asked her to share her story so others could benefit from her experienced she didn’t hesitate. Here’s her story and how she learned to be her own advocate.

My parents got the diagnosis at my birth. I was born without amniotic fluid, with a pneumothorax. As soon as I was born they took me away from my mom and later looked up my symptoms in a medical book and told her that I had ARPKD and I would die within 2 weeks. I’m twenty now and I had my kidney/liver transplant December 12th 2009.

There have been different things throughout my life that I would say have been especially hard. I didn’t feel too different most of the time before I was 13. A lot of the time I looked different than other people because I had an enlarged abdomen. Then when I got sicker it was very hard to not be able to go to school and hang out with friends and go to parties and graduate high school and go to college. I just wanted to do regular teenage things. It was made even harder by people who were jealous that I didn’t come to school sometimes and said I was lucky. They didn’t understand that it wasn’t because I didn’t want to stay home; I just couldn’t make it through the day.

Becoming her own advocate

I’m not sure what my first memory of advocating for myself is but I think I started out by telling nurses things like where or how to take my blood or give me an IV. Little things like that just slowly turned into bigger things — things that would affect my treatment like when I was misdiagnosed. I did research and tried to explain to my doctor what I thought and when he didn’t listen to me I went to a specialist in ARPKD to see if I was right. She said I was and sent my nephrologist a note.

A few times if I had not advocated for myself I would have been seriously injured or could have died.

I think I started advocating for myself because I saw my mom do it so often. She wasn’t like one of the parents that just sits there and listens to the doctors without ever trying to learn or question them; she always tried to do what was best for me no matter what. She also always supported me. It was easy to advocate for myself when I always had someone who would believe me and advocate for what I wanted when people weren’t listening.

Making her way in school

For school, I tried as hard as I could for as long as I could. For all three years I was in high school I had trouble going a full day. In the second semester of my third year the biomedical academy kicked me out for having an incomplete in AP US History because I was absent. The school had been trying to make me go to home bound until I turned 17 . By then so I felt no use pushing myself too much at school.

I finished out the year in home bound but decided that even it was too hard at that point, especially because I still had to go up to school to cram physics and take all the quizzes and exam. After that I decided I would just get my GED. My parents were completely supportive of my decision. It seemed like a waste of time to go back to high school after all my friends had graduated since I had such a low GPA from all of the incompletes in my classes. So one of the counselors from my high school and I decided that I was going to get my GED and then go to college.

Invisible disability

Nobody really treated me like I was sick because most people couldn’t really see that I was. They treated me differently because I couldn’t come to school all the time and so I wasn’t reliable for things like group projects. Most of them also didn’t get close to me because they didn’t see me every day like all their other peers. The ones that knew I was sick were my friends. Those few real friends treated me just the same.

My recovery seems never ending to me. My scars are completely healed now and my encephalopathy is getting better every day. My balance came back just a few days after my transplant but my memory, concentration, reading, etc. are getting better still. I am still trying to get my strength and stamina back, but there is a huge difference in what I can do now and what I could do before transplant.

The hardest things in my recovery have been medicine related. I gained a bunch of weight and acne from the Prednisone and I had to take a lot more Prednisone than the average transplant patient since my liver rejected twice a month after my transplant from not having the brand name of another immunosupressant.

“I plan to be a doctor”

My future plans are to get as healthy as I can. I want to get my driver’s licence and GED and then go on to college. I plan to be a doctor. I want be a nephrologist and a hepatologist that specializes in ARPKD. I really think that I could identify with and help other people with my disease and educate other doctors further on it. I would really just like to live my life to the fullest now and enjoy it since I have gotten it now.

For both parents and teens I would really say that educating yourself on your kid’s or your own medical problems is one of the best things you can do. It is easier — and people take you much more seriously — when you have an idea of what your talking about.

You need to think about what the best thing is in the long run after you educate yourself. Think about the past experiences that you have had and if anything like that is happening or applies in the current situation.

I’m not sure what my parents did differently from other peoples parents, but some of the people with my disease that I know just wanted their medical problems to go away so badly that they ignored them and that lead to greater problems. I’m not sure what else I can say for the parents to do besides just supporting their kids. Everyone is different and some people just have an easier time with medical things and advocating.

Advice to other teens

For teens having challenges, my biggest challenge besides just being seriously ill in general was getting depressed from constantly not being able to do things and feeling bad and feeling like it was all never ending. What really helped me with all that was surrounding myself with people and activities. I would go to book clubs and women’s groups and youth groups and girl scouts and games nights with people.

If my friends were doing things I couldn’t do, I would hang out with adults instead. Most adults were able to treat me normally and I was able to relax and have fun that I could handle. It all really helped a lot. Reading books about similar situations, talking to people with my illness or other illnesses and their families, talking to people who had similar experiences and were now doing better, were all helpful things I tried to do.

-Betty Foreman (ARPKD/CHF, kidney/liver transplant Dec ’09)

Do you have any thoughts to share with Betty? Comment here and we will forward them on to her!