Shelly Baer always wanted to share her story, and the lessons she learned growing up with a chronic illness, with physicians and physicians in training, medical students and resident physicians. Her dream came true five years ago when she was hired to be a consultant at the University of Miami School of Medicine's Mailman Center for Child Development. Now she works full-time at the Mailman Center and is coordinator of the Emerging Transformational Leadership Program and director of Understanding the Family Perspective rotation, where she is one of the speakers. Each month, Shelly shares her life’s perspective story with a small group of interdisciplinary trainees, which consists of physicians, social workers, audiologists, speech pathologists and psychologists.

The talk that she gives to them is outlined below. It includes her story, as well as her suggestions to healthcare providers. She hopes that professionals learn from her experiences and consider different approaches when treating children, teenagers and young adults with a chronic illness and/or disability.

≈ Girl, Interrupted by Diagnosis ≈ ›

I was diagnosed at age 3 with juvenile rheumatoid arthritis, or "Arthur" as my friends with juvenile rheumatoid arthritis call it. I got the worst kind — polyarticular — the type that affects every joint. My mom always said I never do anything small. I don't have many memories of the early years. There was a fever, a constant swollen knee and a rash and it took about a year to make the diagnosis. My parents were young and since I was their first child, they didn't handle it well. My dad, a doctor, must have felt doubly helpless. “My child is sick and I can't make her better.” I remember Dr. Callabro, the rheumatologist, preparing the huge needle to be jabbed in my knee. I only wanted my dad to give it to me. And he did because he was a doctor.

Before my diagnosis, I loudly sang my favorite song, Downtown, to strangers. Nothing was explained of these strange happenings to my body. The hospitals, doctor's offices, being stripped, examined, stared at, poked, prodded, the pink pills, x-rays, blood sticks, physical therapy, occupational therapy, splints, shots and warm whirlpools made me stop singing. I sometimes would hear my mom's muffled cries from the room next door. Or see my father's masked anger and confusion. Empty platitudes of "there is no reason to be afraid" and "you're such a brave girl" seemed to slip right through me.

I had a few surgeries (or procedures as they called them) by age 8. To this day I don't remember them and I don't remember if I was ever, as a kid, told the words juvenile rheumatoid arthritis. I was pretty much a normal kid, with little interruptions, just weekly doctors' visits to get gold injections in my butt by Nurse Schwartz. The thick yellow liquid burned. I would often fake stomachaches to get out of going. My mom knew my ploy, but it sometimes worked. I did have physical therapy after school with June Wallace, where she stretched and strengthened my body, but often it felt like a play session, not therapy. I think I was a manipulative kid, who wanted to be stretched. I wanted to play, be like everyone else. I saw my siblings going outside and running and knew I could not do that. But my parents always encouraged me to be active, to do what I could. So I swam, did ballet for a minute, jumped on the trampoline even though I was scared, and learned to ride a bike with the help of my physical therapist.

Take Aways:

• Never say it's not going to hurt, we know you're lying.
• Tell the child what is happening, address his/her fears and feeling out lack of control.
• Let children make as many decisions as possible: choose where they want the shot, give them a tour of the operating room beforehand, etc.
• Don't say, "You're such a good patient" or "You're such a good girl." I heard that a lot and didn’t know what it meant. Instead, consider saying, "I admire your courage."

š≈ Teen, Interrupted by Surgeries ›≈

The reality of being different hit during adolescence, when body appearance was paramount. I remember going away to summer camp, a first time experience without my parents, and where I tried to deny my arthritis. I used to conveniently forget to take my medications because it meant walking to the out-of-the-way infirmary. I remember suffering a huge flare-up and my dad's rheumatologist friend had to come all the way from Philadelphia to Elmer, N.J., to see me. It was a self-defeated move, but in the moment I didn't care. Another time a classmate said to me, "Why can't you walk right?" I shrunk and cried in the bathroom, my best friend was there but I couldn't even tell her what happened. So, denying my arthritis was getting harder. And by seventh-grade, the cartilage in my hips was gone and I was confined to a wheelchair. I resisted going to school, but my parents insisted and they arranged for friends to push me around. I soon needed to become bionic and had total hip replacements at age 14. I was hospitalized in Boston for six weeks, before managed care, and it wasn't terrible. The surgery, however, sucked. The small hospital only housed rheumatoid arthritis patients, who at the time were mainly old people. It freaked me out in the beginning, but then I found my handful of peers. It was the first time I met others who were going through the same struggles as me. I felt less isolated and it also gave me a chance to see that others were worse off than me. My body was changing and my friends were dating. I wasn't. I was small and un-developed; however, I wasn't worried about not walking. I was worried about never growing breasts.

Take Aways:

• Don't forget emotional context. Even though my parents did take me to therapy, I don't think it helped. Help parents and kids find the right psychotherapist to work with.
• Refer to a support group or a peer who has the same illness.
• Even though these teens still looks like children, they are not. We feel scared and confused. We need someone to talk with about sexuality. I never got that talk from my rheumatologist and even though I was light years from that, I still had fears that I couldn't have sex with my joint limitations.
• Look at the whole person, not just side effects or pain in the joints, as you are going to be caring for them for a while.
• Empower parents to begin separating from their teen and encourage the teen to be more independent. You can help with this by talking to the teen without parent(s) in the room.
• Remember gender differences and how they may apply to coping with an illness: Boys have a stronger connection to body, fighting, competition, more in body. Girls are more focused on being thin and pretty. They may have body image issues and/or may disconnect from their body.

š≈ Young Adult, Interrupted by More Surgeries ›≈

You never get used to the roller coaster of arthritis. It can be calm for years and then you have a flare-up or need some sort of surgery. The worst is the disruption of time; I didn't want to be separated from my life by this damn disease once again. College years breezed through with no surgery, so I kind of forgot. Even though it was visible, it was easy to deny. In college, my parents bought me a little scooter, which I used for a day. I didn't need it, I told myself. I was fine. Senior year, I even agreed to live in a second floor apartment, as I wanted to be with my friends. That lasted a week because by then I had no cartilage in my knees.

It took me until I was in my mid-20s in graduate school to take control of my care. Even though it was easier to let my parents take care of things, I began to speak up. I had two more surgeries in-between graduate school: a revision of the right hip replacement and a total knee replacement. (Now I'm truly bionic!) In graduate school, I was learning how to help others, but first I had to learn how to help myself. So, while in the jungle of New York City, when my school offered to loan me an electric wheelchair, I jumped at the chance. In the city, I noticed and felt more of the inequities and struggles with accessibility. Many of the sidewalks didn't have curb cuts so I rode in the streets. My friends thought I was crazy, but I had to get around. In my dorm, the elevator often didn't work and there was no back-up. My knees had no cartilage then, so stairs felt excruciating. I should have postponed graduate school and I was encouraged to do so, but I was determined to graduate with my class. And I did.

Take Aways:

• Don't label a patient "difficult." Feeling like I was food for a vampire, I refused successive blood draws. I take pride in being difficult. I was, and can be, a real pain in the ass.
• Look at what is underneath the being "difficult." It is a way to maintain a sense of control. With a chronic illness, any illness, you feel so out of control. I think patients who are more "difficult" have better outcomes. Of course having a positive attitude, which I do, is crucial. I always healed well and fast.
• Don't label parent as "difficult.” My mom was like Shirley MacLaine in Terms of Endearment. The chart said that she was "too enmeshed" with me. Parents need time before they can trust the hospital staff with their most precious possession.
• During hospital stays, encourage kids/teens to wear their own pajamas. It makes one feel better to be in something of your own rather than those sterile, ugly gowns. And I believe that promotes faster healing.
• Even though I was not diagnosed with a terminal chronic illness, I acknowledge and see all the surgeries, procedures and more that I went through as traumatic. It took a while for me to own that. Every time I went under the knife (and still go under the knife) I think about not waking up. Don't forget the effects on the whole family. My two younger siblings were neglected since I required so much attention. Be part clinician, healer and social worker.

≈ I Knew I Was a Woman, Integrated ≈

...when I felt comfortable enough with my body to co-create a photography exhibit of 20 women with disabilities and pose nude at 42. Read more about it here.

Related story:

• Posing nude at 42...when you're not a 10
   (One disabled woman's story about baring it all)

Shelly Baer, a licensed clinical social worker, has worked in the Miami community for more than 20 years. She's employed at University of Miami Miller School of Medicine's Mailman Center for Child Development as coordinator of The Emerging Transformational Leadership Program and associate director of the Leadership Education in Neurodevelopmental Disabilities training program.

Baer was diagnosed with juvenile rheumatoid arthritis at age 3, but it has never slowed her down. She pushes boundaries and doesn't let her disability hold her back. In 2006, through her involvement in Center for Independent Living, Baer co-created Uncensored Life: Raw Beauty, a photography exhibit that showcased the beauty, sensuality and empowerment of women with disabilities.

She has a coaching and counseling business helping individuals find love and have healthy relationships. Recently married, she is working on a memoir about her dating dramas with a disability and another project with her husband. Check out her website, love-ABLE.com.