Assessing Your Mental Health & Questions to Ask
Because ichthyosis can disrupt your life in a number of ways, it’s important to pay attention to how it’s affecting you and your relationships, life goals and ability to be involved in your community.
Common symptoms of stress include:
- Anxiety
- Irritability
- Relationship difficulties or tensions
- Frequent headaches
- Loss of interest in activities that used to bring joy
- Trouble sleeping
- Difficulty concentrating
Know your coping style
Coping skills are the way in which you (or your child) respond to difficult experiences. Taking a look at how you or your child copes with ichthyosis -- and all that comes with it -- is important so you can reset, find healthier ways of coping and get more support if needed. There will most certainly be good and bad days. It’s also OK to not be OK sometimes.
Still, having helpful ways for dealing with the challenges of ichthyosis may help put you in a better place emotionally. It’s like creating your own toolbox to shore up how you approach living with this disease. During these times, it is especially important to tap into your support system, talk to a trusted friend or family member, and seek out the things that bring you joy.
There are different ways of dealing with the stress and uncertainty of a rare skin condition.
Which of the following are more in line with how you/your child’s deal with stress?
POSITIVE COPING
- Reframing negative thoughts into positive ones, as best you can
- Focusing on the things you can control
- Limiting “should have” statements
- Knowing how to get ahead of or calm thoughts that feel overwhelming
- Talking it out with someone you trust
- Finding ways to be mindful and aware of your feelings, for example, journaling, doing deep breathing or yoga
- Pairing your skin routine with something positive or relaxing (listening to your favorite music, lighting a candle, etc.) so it feels less tedious
- Setting healthy boundaries
NEGATIVE COPING
- Noticing negative self-talk, criticizing yourself
- Withdrawing from people or activities you usually enjoy
- Turning to alcohol or drugs to “feel better”
- Skipping skin care routines
- Over or undereating
- Sleeping too much
- Denying or bottling up your feelings or avoiding issues
- Engaging in behaviors that allow you to escape reality too much
Questions to ask yourself
Mental health experts recommend asking a few questions to 1) have a more complete pictures of how ichthyosis is affecting your emotional and psychological health and 2) know if you have symptoms of depression and may benefit from additional support and/or cognitive behavioral therapy.
Be sure to share your answers with your health care team so they can help connect you with resources. Talking with other people who live with ichthyosis is important too. This is known as peer support. FIRST provides private Facebook groups and a Teen Instagram Page. Many of these questions can also help parents and caregivers know if they are overly stressed and could use more support.
- Would you say that you have more bad days than good? How do you typically handle difficult days?
- What do you do for self-care (to look after your overall health)?
- Do you have enough time built in for fun (not only being focused on the disease)? If no, what gets in the way?
- Are there trusted people or activities that help boost your spirits and/or help you feel more in control of managing your ichthyosis? What are they?
- Are there things you are struggling with? What about avoiding certain feelings, people or activities?
- Are you more emotional or tired than usual?
- How helpful is your support network?
- Are you or have you ever had thoughts of harming yourself?
Recognizing the signs of depression
There are a series of questions doctors often use to help determine if someone is depressed. Ask yourself how often in the past two weeks have you noticed any of the following:
- Having little interest or pleasure in doing things you usually enjoy
- Feeling down, depressed or hopeless
- Isolating or pulling yourself away from people
- Trouble falling or staying asleep or sleeping too much
- Poor appetite or overeating
- Feeling badly about yourself
- Trouble concentrating
| In crisis? Call or text 988. If you or a loved one feels, or unsure of where to turn, call or text 988 now. This is the suicide and crisis hotline and trained experts are ready and willing to help. |
Talk with your health care team if you’ve noticed any of these in you or your child. They can help connect you with resources.
write down positive coping skills & post where you can see it Downloadable Sheet
Use this downloadable sheet to write down positive coping skills and post it where you can see it.
[this is in process, will send by next week]
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