Navigating parenthood is a challenge for every parent. In addition to the standard twists and turns of parenting, parents caring for a child or children with a rare or undiagnosed condition face a minefield of uncertainty.
Navigating parenthood is a challenge for every parent. In addition to the standard twists and turns of parenting, parents caring for a child or children with a rare or undiagnosed condition face a minefield of uncertainty.
For example, a diagnosis may be delayed or your child’s condition not be explicitly defined. In addition, attempting to solve the medical mystery requires far more doctor visits and tests than other children need. As a result, you’re constantly juggling volumes of medical information, trying to choose the course of therapy — if any are even available — and dealing with a scarcity of medical resources. Even if you’re a positive person, it’s stressful and can take a toll on you and the entire family.
Your first instinct is to devote everything you have to your child. However, while that’s understandable, it’s not healthy. When you don’t take time for yourself to recharge, you cannot do your best for your child. Yes, it may sound unrealistic for parents in the throes of raising a child or children with rare or undiagnosed conditions to take time for themselves, but sacrificing your needs doesn’t help you or your child. It’s essential to find the right balance for your family to get the best version of you.
Spending a great deal of time in hospitals and medical offices, managing daily care routines, and calling specialists, insurance companies, and pharmacies, on top of everything else in your life, makes finding time for yourself challenging, if not impossible.
Yes, we’re talking about self-care. Sure, it’s an overused buzzword in the media, with medical professionals and parenting educators advocating for parents to take care of themselves just as much as they care for their children. But that doesn’t mean it’s not valid.
It’s easy to view self-care as a low priority when caring for a child with a rare or undiagnosed condition. However, countless studies on the impact of stress have shown that it can significantly jeopardize a person’s overall health. Stress can cause a multitude of health issues, including anxiety, depression, digestive problems, headaches, heart disease and heart attack, and high blood pressure.
Different people find different strategies to cope. Self-care can include formal therapy or things you do for yourself. Choose a healthy method that works for you and take steps to avoid the health impact of stress.
You may find that there are days when it’s just not possible to take time out. That’s okay. The key is to find things that calm and recharge you, like healthy ways to relax, have fun, exercise, or socialize. It can help you maintain stamina for your care duties and give you time when you are just you. Try out some of these ideas or create self-care practices that work for you.
A 2019 study found that compassion- and mindfulness-based interventions were beneficial to parents caring for children with chronic conditions. Even just ten or fifteen minutes can deliver results. Free guided mindful meditations are available from UCLA Health and UMASS Medical School. You can also find suggestions for apps from the experts at mindful.org.
The ancient yoga and Tai Chi practices can provide excellent activity and healing techniques. By releasing held tension, paying attention to the present, and regulating the nervous system, a somatic approach can help ease the feelings of helplessness, fear, arousal, and disconnection that can arise by releasing held tension, paying attention to the present, and regulating the nervous system.
Find a class near you or attend a virtual class. In addition, there are multiple online Tai Chi and yoga offerings. Simply taking a walk can also do wonders to alleviate stress and support a healthy lifestyle.
Music as a healing method dates back to the Greek philosopher Pythagoras, who prescribed music to treat physical and psychological conditions. According to the American Music Therapy Association, music therapy helps by providing non-verbal outlets for emotions linked with stress and anxiety reduction and positive mood changes, and enhanced feelings of confidence, control, and empowerment.
According to the National Library of Medicine, a team of researchers in Finland found that patients who received music therapy showed a 50% or more significant improvement in treating symptoms of depression.
Check out Coursera for various free, virtual music classes.
Sometimes just talking with another parent who is on a similar journey can be a form of self-care. Whether you’re searching for information or seeking a compassionate message, finding your tribe can make a big difference.
Various support networks, including well-known social media platforms, such as Facebook and other social media platforms, have groups that allow families to connect. You can also be part of the conversation by following @ncats_nih_gov and @ORDR. In addition, the online international community for rare diseases, RareConnect, has created a global, multilingual community for undiagnosed conditions.
As frustrating and exhausting as it can be to parent a child with a rare or undiagnosed condition, taking time out for yourself is a strategy that will serve you well. Avoid feeling guilty for choosing yourself because it will enable you to be a better caregiver for your child.
Know that the commitment of the dedicated doctors and researchers at TGen’s Center for Rare Childhood Disorders (also known as the Center) and others continue to offer hope for children with undiagnosed and rare conditions.
Through the generosity of donors, the Center provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children. You can help us provide families with hope and answers with a cash donation, participating in a fundraising event, or donating gifts of stock or securities.