By Patricia Marik, Psy.D., M.A.
What comes to mind when you think about “self-care”? Do you picture bubble baths and massages? Maybe a comfy chair under an umbrella on some faraway beach? Keep those pictures in your mind. We’ll come back to them.
Being a caregiver or loved one of someone with ectodermal dysplasia or having ectodermal dysplasia yourself (or both) can add additional stress to your life at times. If we don’t take care of ourselves, especially during times of high stress, we can end up experiencing burnout.
Key Takeaways
- Self-Care for ectodermal dysplasia involves more than just leisure activities; it includes addressing tasks we often avoid.
- Burnout can occur in caretaking and personal life, impacting emotional, cognitive, and social well-being.
- To increase self-care and reduce burnout, be aware of warning signs, take care of your physical health, and seek social support.
- Focusing on personal values, setting boundaries, and practicing self-compassion are crucial strategies.
- True self-care often requires doing necessary but unenjoyable tasks that lead to a sense of accomplishment.
Understanding Burnout
While burnout is most often discussed in the setting of a job, we can experience burnout in a variety of areas that also include caretaking and our personal life. According to Mental Health America, burnout happens “when ongoing stress leaves you exhausted – emotionally, physically or mentally.” Burnout can show up in a variety of ways including emotionally (feeling depressed, irritated, or hopeless), cognitively (feeling a loss of meaning in what you are doing), socially (feeling isolated, conflicted relationships), or behaviorally (avoidance, putting off decisions).
What Real Self-Care Looks Like
Now back to self-care. Self-care is one of the strategies that can help reduce burnout. Unfortunately, while bubble baths, massages and time on the beach can all be amazing, true self-care often comes from doing the things that we may not want to do but we know will make us feel great when they are done.
Think of things like tackling that pile of dirty dishes in the sink, taking that bag of clothes in your trunk to donate, or even finally making that counseling appointment you have been thinking about for years. We feel productive and often calmer and more peaceful after accomplishing these tasks. Ironically, it is often when we feel we do not have time for self-care that we need self-care the most.
Six Ways to Increase Self-Care for Ectodermal Dysplasia and Reduce Burnout
In addition to self-care, there are a few other things we can do to help increase self-care and reduce burnout. These include:
1. Be aware that you can experience burnout.
We can’t fix what we’re not aware of, so this really is the first step. Awareness can come in a variety of forms. Maybe it’s a check-in with yourself or a loved one once a week to ask how stressed you’ve felt or seemed. It can be a daily journal where you record highs and lows and look for patterns. Ideally, we can start to learn our own individual warning signs of stress and burnout so we can intervene early. Examples of warning signs some people experience can be difficulty sleeping, skipping workouts, increased physical complaints like stomach aches, and dreading going to work. There are many more.
2. Take care of your physical health.
This includes getting good sleep, eating nourishing foods, and even taking time away from technology. While it can feel good in the short term, an evening spent mindlessly scrolling probably won’t make you feel better in the long run!
3. Seek out social support.
This is a community that is helpful to you. It may be a group of local parents, a faith community, a volunteer group, or any other kind of group. The National Foundation for Ectodermal Dysplasias (NFED) is a great example of social support, too!
4. Focus on meaning making.
This can (but does not have to) include spirituality and faith. What are your values and how are you living them out? If you value humor, are you and your family finding little areas of laughter each day? If you value physical movement, are you moving your body daily? If you value alone time, are you taking a few minutes each day to reconnect with yourself? We often drift away from the things that we value when we’re experiencing stress and burnout and even just a few minutes reconnecting with these values can be helpful.
5. Set boundaries.
This is an ongoing process for all of us. It may be as “simple” as saying no to bringing cookies to a school bake sale or as large as having a difficult talk with loved ones. Remember, boundaries are for those of us setting them. We can’t control if others respect them, but we can work to stick to them ourselves.
6. Have self-compassion.
Be kind to yourself. We all fall down on self-care at times – even those of us who teach others about self-care! A good goal is to be as kind to yourself as you are to your best friend.
Dr. Marik is a guest blogger for the NFED and a member of the NFED Scientific Advisory Council. She’s a pediatric psychologist at the Medical College of Wisconsin.
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