Beyond the Diagnosis: Priotitizing Mental Health with NF

In today's world, mental health is at the forefront of personal and professional conversations, and yet it remains one of the most abstract topics out there. And I get why, to be honest. The concept of taking care of our minds is strange, even when the physical struggle of chronic or rare diseases like NF isn't factored in. But hey, what are random blog posts written by a teenager for if not discussing really deep topics?

Hello there, I'm Shruti and I was diagnosed with a rare genetic condition called neurofibromatosis type 2 at age six (read my first blog post to learn more!!). In this post, I want to mention some strategies that I've found useful when it comes to giving myself a mental breather among the chaos of NF and life in general--let's talk about it.

1. Take it one day at a time

When living with a chronic or rare illness, the future can seem like a jumble of uncertainty...to a certain extent, it is. But I've found it crucial to only really stress about things that I can control; don't be afraid to make these super small things, like what you'll eat for lunch.

Anxiety and depression are the largest mental health conditions that individuals with health complications struggle with, and while some of the medical reasons for that can't be controlled, how you deal with the reality can.

A well-organized daily routine can enhance mental health.

2. Practice Mindfulness

I know that words like "mindfulness" have just become buzzwords as of late, but the practice of reflecting and removing yourself mentally from your stressors is essential. I personally like to do 15 minutes of yoga every morning, since it's quick and gets me feeling ready for the day. It's also a greater way to stay in touch with my body and be grateful for what it can, despite the effects of NF.

If consistency tends to be an issue for you, apps like Headspace or Calm can guide you through these practices, making it easier to build a daily habit of mindfulness. Studies reveal that just 10 minutes of meditation each day can lead to a 25% improvement in overall mental well-being.

3. Stay Connected with Support Groups

Isolation can heighten anxiety and depression, which highlights the importance of connecting with others who understand your situation, unique as it may be.

Support groups for individuals with NF or other chronic illnesses can help build a sense of community. Sharing challenges, victories, and experiences with others can be incredibly healing. NF Northeast has an amazing peer support program for individuals with NF called "Matched With Hope", where people with NF can be paired with others similar to them in age, location, and situation who also have NF.

Joining support groups can provide valuable connections and understanding.

4. Incorporate Physical Activity

Now, I get that exercising or doing intense physical activity with NF can be challenging, especially considering the side effects that various corrective procedures can have on things like motor control and vision. However, even simple things like walking or stretching can greatly help you feel fulfilled and proud of yourself (at least that's what it does for me).

When trying to incorporate physical activity into your daily routine, consider joining a sports team, setting personal goals, and being understanding of your own limits. Remember, you're doing this to become the best version of yourself, not better than others.

Engaging in self-care is essential for maintaining mental health.

5. Set Realistic Goals

Setting achievable goals can be motivational and foster a sense of accomplishment. Start small and expand your goals gradually as you gain confidence.

Goals can be anything from finishing a book to participating in a social event. Celebrating small achievements can remind you that progress is possible, even during tough times.

6. Explore Creative Outlets

Finding a creative outlet can serve as a powerful release for emotional stress. Whether it involves painting, writing, music, or crafting, engaging in creative activities can help channel feelings and stimulate the mind.

For instance, those who write regularly have reported a 20% decrease in stress levels and a greater sense of control over their lives.

7. Practice Gratitude

Being thankful is sometime really hard when living with a rare disease like NF--it's easier to look with contempt at what you don't have compared to others. This could range from athletic endurance, intellectual ability, to simply better health. I personally struggled for years with gratefulness (and I still do, every day), but I've come to a point where accepting where my life lacks and moving forward while looking at what I have has let me live more fully.

Some popular strategies for practicing mindfulness are writing in a journal or creating a video diary, but it's okay even if you don't want to do that. Gratitude is a deeply personal and internal concept; writing it on a piece of paper means next to nothing if you don't internalize that mindset.

8. Limit Negative Influences

Reducing your exposure to negative news, social media, or toxic relationships is essential for maintaining a positive mindset.

Be intentional about creating an environment that supports your growth and well-being. Surround yourself with positivity through uplifting media and relationships.

9. Stay Educated

Educating yourself about NF and your condition can empower you and combat anxiety. Knowledge breeds confidence, which can assist you in discussions with healthcare professionals.

Attend workshops, read literature, and connect with reputable sources to learn more about your condition. A greater resource is the NF Northeast website, which has a trove of information regarding NF experts, advocacy opportunities, and healthcare strategies.

10. Embrace Flexibility

Living with a chronic illness such as NF often brings unpredictability. Allowing yourself to be flexible in your plans can lessen frustration and anxiety.

Instead of rigidly sticking to a schedule, adjust your plans based on how you are feeling each day. This approach can enhance your emotional resilience.

The Importance of Mental Wellness

Taking care of your mental health is just as important as addressing the physical aspects of living with neurofibromatosis or any rare disease. By integrating daily routines, mindfulness, and self-care, we can foster a healthy environment for our minds.

Remember, seeking help is not a sign of weakness. It is a sign of strength and a step towards improvement. Prioritize your mental well-being and embrace your journey with the understanding that you are not alone. By adopting these strategies into our lives, we can improve our quality of life despite the challenges that chronic conditions present.

You deserve to thrive in all aspects of life. I hope this list serves as a helpful guide on your path to better mental health.

And also remember: You are what you make yourself, and you are enough.

Live Boldly,

Shruti Shah