Mental Health and RRP
When you have been diagnosed with RRP, it impacts more than just your physical health.
Between the unpredictability about future surgeries, voice changes or loss, as well as missing school, work and social events due to treatment, it is no wonder that RRP can lead to new struggles with mental health or worsen existing ones.
of patients reported that they missed at least 5 days of work each month due to their RRP1
of RRP patients avoided participating in social and/or career activities due to concerns over their voice quality.1
of polled RRP patients stated that they paid at least 5% of their annual salary towards RRP-related medical care.1
of RRP Patients reported social anxiety.1
WHAT EMOTIONS ARE NORMAL IN RRP?
It is normal to have all kinds of emotions with a RRP diagnosis:
- Sadness
- Fear
- Anxiety
- Anger
- Guilt
- Disappointment
- Loneliness
- Numbness
All these emotions are part of a natural, expected response to a big life change. There’s nothing wrong with you if you feel any or all these emotions! They are part of the full range of human emotions that we are all supposed to and allowed to feel, so it is important that you give yourself permission to feel them. Your feelings may change each week, day or even each minute.
RELATIONSHIPS AND RRP
RRP can have a huge impact on all important relationships in your life. Needing to rely on others for support, even family, may lead to feelings of guilt. Sometimes family roles and dynamics need to change, which impacts parents, siblings and extended family.
Friends may not know what to say about your diagnosis, so they may say the wrong thing, give unsolicited advice, or say nothing at all. This comes from their own ignorance or fear of things they do not understand. You may worry about friends pulling away if you are no longer able to spend the same amount of time to them as before.
GRIEF AND RRP
Being diagnosed with RRP is a type of loss and needs to be grieved and mourned in the same way as when we lose someone we love. In addition to losing your health, there are many other possible losses to grieve: your sense of safety, how you would like to look or speak, how you would like to spend your time, your ability to go to school or work the same as before, loss of finances, and many more.
These losses are not easily noticed or understood by family and friends, so there is less support to help with the grief.
TRAUMA AND RRP
When you think of trauma, you may initially think of soldiers, war and violence. But our brains can develop the same reaction in response to any event that they read as traumatic, such as learning you have RRP, long hospital stays, multiple surgeries and fear of need for future surgeries. Studies report that 12-25% of people who go through a life-threatening medical event develop medical or illnessinduced PTSD.2
Unlike traditional PTSD where the triggers are in the outside world, in medical PTSD the triggers can be internal, including physical symptoms of RRP that we cannot avoid. Other medical triggers, like doctor’s visits and hospital stays, may also be unavoidable. We have no choice over how our brains read these events and if our brains see these events as traumatic. Experiencing trauma can lead to nightmares and flashbacks, wanting to avoid certain places or things, feeling always on guard, and intense negative emotions or numbness.
UNIQUE CHALLENGES OF ADULT ONSET RRP
When you are diagnosed with RRP as an adult, one of the greatest challenges can be that you remember and miss your adult life before your diagnosis. It is hard to grieve a self that no longer exists- our culture does not have any good vocabulary or ritual for this type of loss. Not only are you grieving who you used to be, but you may also need to grieve the healthy future version of yourself that you hoped to become. You may also see that your loved ones and family are grieving that version of you.
As an adult, you may be balancing your chronic illness with work. If your RRP does not interfere with your ability to do your daily job, then you are not required to inform your company. However, there are several laws in place to help you stay at work. The Americans with Disabilities Act requires your workplace to provide “reasonable accommodations” at work. The Family Medical Leave Act protects your job if you need to take a longer leave due to health reasons.
UNIQUE CHALLENGES OF CHILDHOOD ONSET RRP
When RRP is diagnosed in childhood, it becomes a family-focused disease, since the child needs so much support in managing their illness. Parents and family must find a healthy balance between giving their children some independence and keeping them safe. This can sometimes complicate the transition into independent adulthood and be hard during teenage years when teenagers naturally seek out independence through pushing boundaries. Parents may also need to balance giving attention to healthy siblings as well.
Teenagers tend to act out or react with anger when they face big life changes and teenagers with RRP is no exception. They may use alcohol and drugs to cope with and avoid scary emotions, as well as fit in with peers. It is important for parents to listen without trying to minimize, avoid or problemsolve your child’s tough feelings – it is normal and healthy for them to have challenging feelings too.
If your child is having trouble with school due to RRP symptoms or treatment, talk to their school about a 504 plan or an IEP plan.
504 plans set up accommodations at school and IEPS (Individual Education Programs) can allow for changes to the workload, attendance and adjusted school days.
WHAT’S NOT HELPFUL FOR COPING?
While certain coping strategies can be useful in specific situations, they aren’t always effective or appropriate for every circumstance.
These include distracting ourselves with phones or TV, avoiding our thoughts and feelings, overeating or impulse shopping, trying to “think positive” and isolating ourselves from others.
Other things are never helpful and can make our mental health worse: being mean or hard on ourselves, comparing ourselves to others, excess alcohol use and drug use. These unhelpful coping skills get in the way of you feeling your emotions and lead can lead to guilt and regret on top of the emotion that you are avoiding.
WHAT IS HELPFUL TO COPE?
The key with the following coping skills is that begin to allow your challenging emotions and thoughts instead of distracting or avoiding them.
Practice sitting with your tough emotions: You can start small (even one minute), give yourself permission to sit with your emotions and thoughts. Set a timer and when it goes off, give yourself permission to go back to your distraction and avoidance until the next day.
- Tip: If you have trouble getting in touch with your emotions at all, music can help!
Try journaling: Set aside some time to write out your thoughts and feelings. Don’t treat this like a diary to recount the events of the day. Instead, try to write all the things that you don’t feel like you can say out loud, so that they are let out.
- Tip: At the end, feel free to tear up your piece of paper if you don’t want anyone to find it.
Practice self-compassion: For some reason, we aren’t always good at being kind to ourselves. Try talking to yourself like you would a friend and notice how much kinder and supportive you are. Next time you notice yourself being harsh on yourself, try saying to yourself something kind and simple, such as “This is really hard”.
- Tip: You don’t have to talk to yourself out loud. This can all be done in your head.
- Tip: Make changes to this practice until it feels natural to you. Maybe try putting a hand over your heart, closing your eyes or incorporating some deep breaths.
Join a support group: There is a lot of power in talking to someone else who has had a similar experience to you. There are certain things that you don’t have to explain because they already understand. Support groups can offer a place to share your thoughts and feelings and help you feel less alone.
- Tip: RRPF has a Facebook Support Group.
WHEN IS MORE HELP NEEDED?
If you are having problems allowing your emotions or feel that your emotions are getting in the way of your daily life, it may be beneficial to seek out professional help. In general, there is never a bad time to seek out counseling for a stressful situation.
It is not a sign of weakness or a lack of faith to ask for help!
In therapy, a professional, licensed therapist will get to know you and your experience. They will work with you to create a plan based on what you want to work on and change. Just having a neutral third party hear your fears and struggles is immensely helpful.
Therapy is covered by insurance. You can find a provider through your insurance’s website, a google search or through an online directory such as Psychology Today. It may be helpful to look for a provider who specializes in chronic illness.
WHAT IF I AM A CAREGIVER OR PARENT OF SOMEONE WITH RRPF?
Caregivers of RRP patients also experience stress, uncertainty and can feel overwhelmed. Most of the same tips above for managing mental health also apply to caregivers. Caregiver burnout can lead to impatience, frustration and even anger. Parents are always worried about their kids but watching them have RRP can make that worry get even worse. Taking good care of yourself and your mental health will help you be a better caregiver in the long run.
MENTAL HEALTH RESOURCES:
National Institute on Mental Health Hotline: 1-800-950-NAMI (6264), text “Helpline” to 62640. Available Monday-Friday 10AM-10PM ET. They also have a Teen and Young Adult Hotline that can be reached at the same number or by texting “Friend” to 62640. This will connect you with other young people who have had similar experiences.
Suicide Prevention Hotline: 988. Available 24/7.
Psychology Today: www.psychologytoday.com Psychology Today is a website that allows you to search therapists by insurance, specialty and location.
Open Path: https://openpathcollective.org Open Path offers discounted therapy services to those in need.
Books for Adults on coping with a Chronic Illness:
- What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller
- You Don’t Look Sick!: Living Well with Invisible Chronic Illness by Joy Selak and Dr. Steven Overman
- Part of You, Not All of You: Shared Wisdom and Guided Journaling for Life with Chronic Illness by Jenneh Rishe
- The Invisible Kingdom: Reimagining Chronic Illness by Megan O’Rourke
- Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties by Laurie Edwards
- The Things We Don’t Say: An Anthology of Chronic Illness Truths by Julie Morgenlender
Books for Children on Chronic Illness and Big Feelings:
- Little Tree: A Story for Children with Serious Medical Illness by Joyce C. Mills
- Tiger Livy by Erin Garcia and Betsy Miller
- Big Tree is Sick: A Story to Help Children Cope with the Serious Illness of a Loved One by Nathalie Slosse
- When Someone I love Doesn’t Feel Good by Sara Olsher • How Do You Care for a Very Sick Bear? By Vanessa Bayer
- Thank you Mind: Understanding My Big Feelings on Tricky Days by Jennifer Cohen Harper
- My Body Sends a Signal: Helping Kids Recognize Emotions and Express Feelings by Natalia Maguire
- Listening to My Body: A Guide to Helping Kids Understand the Connection Between Their Sensations (what the heck are those?) and Feelings So That They Can Get Better At Figuring Out What They Need by Gabi Garcia
References
- So, R.J., McClellan, K. and Best, S.R. (2023), Recurrent Respiratory Papillomatosis: Quality of Life Data from an International Patient Registry. The Laryngoscope, 133: 1919-1926. https://doi.org/10.1002/ lary.30401
- Edmondson, D. (2014). An enduring somatic threat model of posttraumatic stress disorder due to acute life-threatening medical events. Soc. Personal Pscyhol. Compass, 8(3), 118-134.
