4 Ways Illness Since Childhood Is Different Than Adult Onset

I am a PhD student and just finished the third year of my program. One of my fellow students in my year started struggling with chronic migraines in our second year and had to take a semester off. When she came back, in addition to her work to get a graduate student union at our university, she started working with students in other departments and programs and at other universities to work for grad students’ identified needs like better health insurance and medical leave.

We taught an intro class together, and one day before lecture started we were sitting with the other teaching assistants in the back of the room. She asked me if I could help with a friend’s research project for her dissertation. This friend was doing in-depth surveys and interviews with graduate students at area universities who had developed a chronic illness in graduate school. She asked, “Would you be interested in working with her? She’s interested in people’s experiences with the university health care and health insurance and with their departments and advisors, especially.”

I let her know with a big sigh that, “I would love to help her out and be a part of the project, but I developed my chronic illness in elementary school so I am not eligible.” The experience of being diagnosed with a chronic illness in adulthood is completely different than being diagnosed as a 9-year-old and growing into adulthood with a chronic illness.

Here are four ways the experience most strikingly differs in my observation:

1. You don’t have to renegotiate your identity.

I am a person with a chronic illness and disability. I am in pain much of the time. I have things that I cannot do. This is my identity in addition to daughter, wife, sister, writer, and student. Sure, I’ve tried to rebel against it in my teens — I even took horseback riding lessons for about a half a second before I almost fell. I tried skiing and ended up going down the mountain on my butt because I didn’t have the sense of balance and ability to fall backwards that you really need to succeed at going downhill upright. But in general, this is a significant part of who I am. It informs everything I do, whether I like it or not. I have built up my other identities — who I am as an adult — with this knowledge and sense of identity.

Although I have struggled with other aspects of my identity as I tried different careers and studies on my way to adulthood and still do, I have never had to give up identities based on being an able person. I have not had to kiss a sport goodbye with reluctance. I have not had to change my major life goals based on a diagnosis. Moreover, I haven’t lost an identity of myself as an able person. I don’t miss a body I never really had.

2. Others don’t have to renegotiate their knowledge of you.

My family has understood that being a chronically ill, in pain, and disabled person is who I am. They incorporate it into their understanding of me and my needs. They learned with me what I needed and what I could do as I did.
And whenever I have incorporated new people into my life, “my family of the heart,” they learned about my passion for reading and writing, my love of chocolate and flowers, and my desire to travel at the same time they learned that I can’t work at a desk, that I need to rest more than most, and that I struggle with pain and mobility issues at times.
I didn’t start out active and then have to give up sports I used to love doing with them. I didn’t have to go from being the life of the party to having to limit myself to a few hours at an event. They don’t have to change their expectations for what I can and will do, and that is in itself a relief.

3. You don’t miss being not ill or disabled.

As I mentioned above, I never really had to shed an identity of myself as an able-bodied person. I was diagnosed with scoliosis at 9 years old and before that I was already struggling with back pain. I spent four years in a back brace at night and then during the day and night. I was in pain in the brace and in pain out of it. Close to my surgery date, my right lung started to collapse and I had breathing problems. My heart functions were also reduced as it was squeezed by my pushy spine.

After surgery I had months and months of recovery. A few years later I started having mobility problems centered around my hips and lower back. I had to have surgery again to replace the rods in my spine keeping it straight. Again, I went through months and months of recovery.

Every part of my life requires me to take my body into consideration. I don’t make plans for the weekend back to back. I don’t like going out on Fridays after a long week. I try to go into school or work less than five days a week. I group errands, appointments, classes, and meetings to reduce commute time.

I don’t miss being energetic, healthy or pain-free. I would like to be all those things, but I don’t really know what they’re like.

4. You are your own patient advocate and medical system and insurance expert.

My mom was an amazing patient advocate for me for years and years. She kept track of insurance bills and coverage. She challenged quotes and lack of coverage for necessary medical care. She stayed with me in the hospital whenever I was there. She only left when I did. She used the hospital shower in my room and slept in the chair by my bed or if she was lucky, in a cot. She ate hospital food unless my dad brought her takeout.

She monitored my medications so I wouldn’t get dependent on medications. She kept track of my x-rays and questioned how many were really necessary to limit my exposure to radiation. She drove me to physical therapy and every doctor appointment. She sat with me in the appointment rooms for hours waiting to be seen by busy orthopedic surgeons. We had some of the best and deepest conversations of my childhood and teenagerhood in those rooms.

Now I’ve been doing this on my own, prepared by watching my mom before me. In the last 10 years, I’ve moved frequently. I’ve moved from insurance to insurance. I’ve seen great, good and lousy doctors. I’ve had my insurance deny me scans, tests, vaccines, and medications that I needed. I’ve pushed back. I’ve filed claims. I’ve submitted out of network claims on medical products and services that were nowhere in network. I’ve gotten the necessary referrals.

I have spent the hours gaining this knowledge and expertise that others put into a hobby, and that healthy people have to start from scratch learning about when they get diagnosed.