“A constant state of coping” - Teen describes transition to adult care

Juvenile Rheumatoid Arthritis has been a dominant hindrance essentially my entire life and much of the way I am as an individual has been shaped by it and my experiences in the medical system. My name is Lindsay Junkin and I am 19 years old.

My Arthritis was always progressive. As I reached the age when my doctors hoped I would out grow it, I instead gained more affected joints and secondary complications. I have had one cataract removal surgery, two glaucoma surgeries both of which was brought on by my Iritis (a common secondary disease to Arthritis), facial reconstruction surgery after my illness stunted the growth of one of my jaw joints and an ankle fusion but those are just my primary surgeries. I also have an extensive list of more minor procedures and an uncountable list of medications. All these treatments were initiated in the hope of managing the disease that was ravaging my body. So it isn’t surprising that there were many times where my family, myself and my doctors were frustrated and at a loss with how to cope with my Arthritis while attempting to provide some quality of life for myself.

In my opinion, growing up with a disease differs in many ways from being diagnosed with one later in life. All the normal milestones seem intensified with the addition of medical issues. As I grew older and more aware of how my body works and what it meant to have Arthritis, I began developing psychological issues. I just felt myself getting more and more anxious about everything: school, friends, self-esteem and especially my health. I can remember the specific event when the stress really erupted. It marked my first real transition into learning to cope with everything. I was almost 16 and my mom and I were at Sick Kids hospital for one of our very regular rheumatology visits. I literally broke down in front of my mom and doctor; everything was too much for me and I felt completely overwhelmed. It all seemed so unmanageable. Although I had widespread support from many people, I felt I was handling it alone and without guidance. Many at this young age would strive to take on new responsibilities and begin developing their sense of independence but I found myself feeling exacerbated when trying to accomplish these same things.

These feelings continued through the next few years as I prepared for the transition between high school and post secondary school as well as from the familiar comfort of my pediatric doctors to new adult care. In the year approaching my 18th birthday, a few of my doctors made small steps towards my transition by referring me to an adult doctor. They wanted to make sure I would transfer to suitable specialists and I was encouraged to see them before my actual birthday. Understandably, I was in the dark about the differences between pediatric care and adult care but soon they were revealed. The difference is not in quality but in levels of attention. As a child when I experienced an abnormality in my health, like a sudden rash, the reaction from my doctors would be to immediately send me to other doctors who treat those specific ailments. Now if I have a new problem it takes months to get in to see these specialists.

One of the biggest challenges for me thus far, as mentioned before, has been the transition from child to adult care. I am always in a constant state of coping. With each new challenge my disease and life brings me, I need to adapt. These adaptations are big and small, serious and trivial and they come to me everyday. Some I don’t notice and others are so big they feel insurmountable. For example, I had to learn how to hold my pen a different way so that writing wouldn’t bother my finger joints as much. I had to cope with the fact that I cannot wear high-heeled shoes because of my ankle fusion. I know that might sound like something simple and unimportant in the long run, but to me it has meant giving up a part of me and my ability to make everyday decisions – many decisions have been made for me.

My experience as a patient has shown me that I must always expect change. I am still learning to cope with being in the adult system and handling my disease independently even though I have been in the system for three years. One of the most important things I have learned and would recommend to others is to give your disease attention on some specific days. When I book appointments and expect to be there for a long period of time, I know to avoid stress that I shouldn’t make any other plans that day. As much as it is important to not let my disease dictate my schedule, there are times when I must give the disease its time. What I find specifically helpful is to keep a date planner. The date planner gives me the feeling of control over my life and disease instead of feeling overwhelmed. And essentially that is what we are all striving for - a way to feel like we, as patients and underneath that, as people, exist outside our diseases.

It is all too clear for me how my life has been negatively affected by my Arthritis and how my quality of life has wavered in the past. However with the support I have found from so many medical professionals, family members and friends I know I can keep standing up and meeting these challenges. I feel strongly that with an increase in outreach to transitioning patients more will succeed and flourish in the next stages of their lives.

Lindsay Junkin has established a support group for teens and young adults and is bringing her experience, perspective and voice to help others with arthritis.