Carissa L. Strohecker Hannum is a practicing psychotherapist who helps others that live with chronic pain, chronic illness, trauma, eating disorders, and mood disorders. She was diagnosed and has been living with Arthritis since she was 15 months old, you are right juvenile rheumatoid arthritis (in the 90s when there wasn’t a ton of research on what to expect)
Doctors told her that “it would get better and go into remission and there was a chance it would progress.” But in her case, it progressed and changed. She has now been diagnosed with Ankylosing Spondylitis which affects her spine, ligaments, and tendons in her pelvis. But in spite of innumerable challenges, she is married and is looking forward to developing a family.
Carrisa believes in overcoming everyday challenges, she says “My arthritis is a big part of my relationship and my husband has been a phenomenal support. My husband, Dylan, is extremely helpful to even get me to listen to my own needs and is my biggest support. My parents laid the foundation to share my needs and now I can do that in my relationship. Dylan will come to doctors’ appointments with me, and surgeries, and has chosen to support me through life’s challenges. I think everyone with arthritis deserves a relationship like this.”
Carissa L. Strohecker Hannum continues to answer questions on concerns regarding challenges, lifestyle modifications called upon, treatment options, and the role of family that seem to bother parents whose child has been diagnosed with arthritis or one who is suffering from juvenile rheumatoid arthritis
Challenges faced as a child at home and at school-
This is tough. Living with arthritis means living with an invisible illness. People will see the kid as entirely normal, which sometimes they might prefer. Other than seeing modified shoes, kids wouldn’t have any idea that I was different unless I would discuss it. I think that was really hard.
If I was out sick or even in high school, when and had to get an infusion, it can make a child feel very different or that they have to grow up fast compared to their peers. I think that is a natural reality that will happen. I found a lot of comfort in finding support groups and engaging in activities provided by our hospital for kids with arthritis. I felt very heard and understood.
With time, and explanation I had a really good group of friends in each of my phases of life that was willing to learn, listen, and realize the challenges of my illness. I think my parents and my medical team helped instill confidence in me and helped teach me how to “own” my illness.
It is okay that I have needs, that are different, and if people aren’t hearing me they probably shouldn’t be my friends. If someone was being judgmental like a teacher, my parents would be involved, but they also coached me on why they were doing what they were doing so that I could also advocate for myself in future instances, like college. It is natural for parents to want to be protective, but also encourage and teach kids to not feel ashamed, and stand up for their needs.
There is still a lot of education needed around arthritis and invisible illnesses in school systems so take the time to educate your school system and what this might mean for your kid. At one point, we actually brought a nurse into kindergarten to help teach my peers as well as my teachers what this may have meant and the parts of arthritis they may not “see” like physical therapy, splints that I had to wear, etc.
Treatment options resorted to in order to improve quality of life-
I feel like I was very lucky in terms of the medical system I grew up around. However, I was diagnosed in the 90s, so kids with arthritis weren’t much known and it was very confusing to navigate. My parents felt much challenged during this time trying to find a doctor or a solution for a 15-month-old that stopped walking and was crying in the middle of the night from the pain.
My doctor actually ran into me, my family, and my orthopedic doctor in the hallway at Penn State Hershey Medical Center, and diagnosed me on the spot/got me in for treatment with her. Her name was Dr. Barbara Ostrov and I was very privileged to have her guide me and my parents through treatment for the first 22 years of my life.
My arthritis changed types, so we had to navigate oral medications and biological medications. I also went through physical therapy numerous times/was taught how to walk again. Later in life, I started to take SSRI medications and work on my mental health, but that came in college.
I would encourage parents to have kids talk to a therapist or even talk to a therapist themselves to help with coping with the diagnosis or challenges around the diagnosis. I obviously believe in it so much that I’m now a mental health therapist myself. But, I do think that seeing a therapist as well as a stellar medical team has helped my prognosis, quality of life, and even how I view my arthritis.
Lifestyle modifications called upon
Something that my parents and my medical team encouraged was assertiveness around my needs and I think learning how to discuss needs is really important in childhood. I think that parents can sometimes want to protect a child from pain and naturally want to fix the pain. I mean, who wouldn’t? It is terrible to see a child in pain, but I didn’t want my parents personally to make decisions for me around my health.
My parents and my doctor allowed me to have agency around some of my choices by helping me weigh the pros and cons of medications as well as decisions around when I needed to rest etc.
My parents had to learn to trust that I’d tell them when I was doing too much if I needed a rest day, or what I could personally handle. I think that it is helpful to know that this will be hard, especially for parents, but I think it is important for kids to feel that they have some agency over what is happening to their bodies. This also creates body trust. If you feel like a doctor isn’t listening to your kid, don’t go to them. Even kids want to be heard.
I had to learn at a young age how to discuss my arthritis with teachers, and kids, and learn how to cope with having to cancel activities, etc. Sometimes kids have to learn how to modify. For instance, although I wanted to be treated as a “normal kid” there was a time when I would need to make hard decisions- like quitting swimming or going to school late. When I was younger my parents may have decided how to dose my activities for me, such as when to take breaks or to sit and rest, but as I aged they would ask me and eventually now they trust I will tell them what I need.
I also used to get sick a lot due to being immune-compromised. It is really important to talk to the school about possible modifications needed, but also have the child be a part of those conversations.
Exercises and diet challenges-
As my arthritis changed I did have to modify what exercise I would choose. I would focus more on activities that feel good, for instance, I would swim until I couldn’t, but then I engaged in a lot of theatre as my physical activity.
I think looking at movement or learning to be pleased with what the body can do, can be helpful versus focusing on what the body can’t do.
I personally never had diet challenges and still don’t, adds in Carissa.
Role of Family in Helping the Child-
Families should be teachers of advocating. I would also say one should learn to make space for your child’s emotions. You may want to fix them but make space for them. Having an illness is a continuous grieving process. Your child might sometimes feel like just another kid in the pact, and other times they might feel sick from medications, miss out on parties, or have to give up an important activity due to pain. It is okay to let them grieve, be sad, be angry, etc.
Make space for these emotions not only for the kid but also for yourself. Find support groups, find parent groups, use social media, and reach out to a therapist, this is really hard! Learning to make space for my emotions and how I felt about my illness was important to my pain management.
It is important to ask the child how they are feeling. My parents really were great about giving me time to process, cry, and just feel my emotions. It is also natural for a child to feel shameful around this, but find ways to help them understand that it is okay to ask for their needs- i.e. talking with other kids with this same illness and learning from one another how to navigate this.
The WF team is grateful to Carissa for sharing her inspiring journey.
Bio: Carissa currently lives in the Washington, DC area and works as a psychotherapist in private practice. She helps others that live with chronic pain, chronic illness, trauma, eating disorders, and mood disorders. She is passionate about advocating for disability rights. She lives with her husband, Dylan, her dog, Copper, and her Cat, Remy. She is an avid reader, theater lover, and Harry Potter fanatic. For further input visit: www.carissahannumtherapy.com