Exploring Spirituality With A Rare Disease:
The Universe and You
The Universe and You
For those living with chronic or rare diseases, having some kind of spiritual practice can be a part of holistic healing, which includes mind, body, and spirit. All three are part of the human experience and that includes the experience of illness.
Learning to live fully in the face of ongoing physical or emotional challenges doesn’t always come easily. Neither does accepting vulnerability as a way of life. It can be scary and uncomfortable for anyone, including acromegaly patients and their allies.
What do you think of when you hear words like spirit, soul, or spirituality? Church, meditation, prayer, and deities may come to mind, but in this discussion, we’ll take a more general approach that looks at spirituality as part of the human experience.
Spirituality for wellbeing
Even those in excellent physical health look for ways to nurture the spirit or soul as a way to cope with life’s challenges. The encouraging news is that healthcare researchers are increasingly incorporating spiritual practices into the measure of wellbeing. They’ve been investigating things like prayer and meditation for some time in an effort to gauge their efficacy in pain management, surgical recovery time, and control of chronic conditions.
Some public schools have even replaced detention with meditation and yoga in an effort to help young students deal with their stress and anxiety more effectively. And the results are positive.1 In fact, research has shown that incorporating some kind of spiritual practice in one’s life can support not only mental and emotional wellness, but also physical health. For those with a rare disease, it can also aid with coping.
In this piece, we’ll explore spirit, soul, and spirituality in many of their forms with the goal of helping you identify some spiritual activities you may want to try. Connecting to your own soul or to “the Universe” (however you define it for yourself) can be a rich, rewarding facet of life.
So open your mind, open your heart, and let’s look at some of the possibilities.
What does spirituality even mean?
Before we go any further, we should take a look at what we mean by the term spirituality because there are as many ways to define it as there are to practice it.
At its core, when we talk about spirituality we’re talking about an awareness of the universe and our connection to it. Or, put more simply, a sense of connection to something greater than ourselves.
It may surprise you to know that there is no widely agreed-upon definition of spirituality. The Oxford dictionary calls it a quality: “the quality of being concerned with the human spirit or soul as opposed to material or physical things.” Merriam-Webster frames it as “something that in ecclesiastical law belongs to the church or to a cleric as such.” While the Cambridge dictionary says spirituality is “the quality that involves deep feelings and beliefs of a religious nature, rather than the physical parts of life.”
When trying to explain something so complex, ethereal, or nuanced, it can be helpful to look at a word’s etymology – its origins. Spirit is derived from the Old French espirit and means “animating or vital principle in man and animals.” Espirit, in turn, comes from the Latin word spiritus, which is related to spirare (to breathe).
And that is a key connection to what we’re talking about. Because you might put these related ideas and meanings together and get “animating breath,” and from there see spirituality as something vital that fills you with what you need to come alive. Something that speaks to your body, your mind, and your soul…and ultimately nourishes them in a way nothing else does, or perhaps even can.
Okay, you’re probably thinking, how in the world do I find something that can do that? Actually, there are tons of ways.
Tapping Into Your Own Brand of Spirituality
Keep in mind as we start exploring ways to tap into spirituality that all paths are valid. There’s no such thing as “better” when it comes to this, and the only “best” is the understanding that the best path is the one that feels right to you. So here are some ideas that may interest you.
We may as well start the list with one of the more well-known and common ways to practice spirituality. Some people derive a great deal of comfort from a formal religious practice, whether it’s a Catholic mass, New Age Spirituality, or something in between. You can learn about dozens of different world religions with a simple Google search.
Many people find nature spiritual. And again, as you can no doubt imagine, there are hundreds of ways to experience nature, depending on your personal preferences. You can draw a connection to the natural world with
- a walk on the beach
- a hike in the woods
- snow or cross-country skiing
- swimming in a natural body of water
- walking barefoot on the earth
- going on a picnic
- lying in the grass and looking up at the sky (or the stars)
- a visit to the zoo
- going to a farmer’s market
- a camping trip
- sitting in a quiet spot outdoors
If you need more structure, consider joining a local chapter of one of the dozens of outdoor organizations like hiking clubs, Sierra Club, The Nature Conservancy, the World Wildlife Fund, or others.
Putting words on a page (or a screen) can be a highly cathartic, revelatory practice. Writing your thoughts and feelings down – whatever they may be – connects you to your inner voice, to your desires and dreams, to yourself. You can journal to keep your thoughts organized, to boost your creativity, to set and achieve goals, relieve stress, or to promote self-reflection.
If you don’t know what to write about, there are all kinds of books and online resources for daily prompts. And don’t feel obligated to share your journal. It can be just for you.
A big proponent of journaling is Julia Cameron, author of the iconic book The Artist’s Way. She calls journaling “morning pages” and she has several interesting things to say about the practice, as outlined in this brief video. While her framework centers on amping up one’s creativity, morning pages can absolutely be used by people who have no ambitions to become a writer. (Interesting note: If you write morning pages, you will be a writer.)
I do a lot of self-reflection myself and my way of channeling my spirituality is to journal and spend a lot of time with myself and just thinking and reflecting and meditating.
Mallory, acromegaly patient since 2020
Meditation and Mindfulness
Meditation is one of those things that used to be shrouded in mystery, thought to be practiced only by people on the fringe of “normal” society. These days, the benefits are more widely known, and people from all walks of life have integrated this ancient practice into their lives.
Meditation is a way to calm your mind and relax your body. Focusing on your breath and allowing your mind to fall quiet clears space for the present moment. Turning your attention to The Now enhances mindfulness, or your awareness of all that is going on with you at this moment in time. Studies have shown this to be therapeutic.
Many people think meditation is difficult because they think they’re not able to clear their mind. But when stray thoughts find their way in while you’re trying to meditate, all that’s required of you is to acknowledge it, gently push it aside, and refocus on your breath. Start small.
Even a short 5-minute meditation can have a positive effect on how you feel. Popular apps like Insight Timer and Headspace make meditation easily accessible and simple to learn.
You can do things like taking some time to be quiet, breathing, doing some yoga. There are specific trainings, there’s YouTube, there’s all kinds of ways to learn some of these things, to quiet the body down and the mind, to allow there to be some peacefulness. It is a wonderful practice and I think it’s just as important as physical exercise.
Linda Rio, MA, LMFT
It can soothe the soul and evoke some of our strongest memories in an instant. We’ve all experienced the power of music to instantly transport us to a place, a time, a mood. Whatever kind of music does that for you, embrace it and go along for the journey whenever you feel the need.
In addition to your favorite genres or artists, there’s an entire genre of music written specifically to promote and enhance spirituality. This type of music goes by many different names: meditation music, spiritual awakening and positive energy music, spiritual ascension music, or soft, calming music for inner peace.
They can come in the form of Gregorian chants, instrumental pieces, Western or Eastern-influenced, and many more. Whatever kind of music makes you feel more connected to the universe, indulge your desire to listen to it as often as you like.
Giving your time in the service of others is a profound way to experience spirituality. The world could use any energy you’re able to give in this regard, and the gifts you get back are tenfold. Performing selfless acts of kindness to benefit people you don’t know or may never even meet is an incredibly effective way to feel connected to the world and to others.
Sites like VolunteerMatch are a great place to get ideas and see what’s out there. Or Google “volunteer” and the name of your city or county and you’ll get more search results than you can sift through in one sitting. There are also national and international volunteer opportunities through foundations, charities, religious organizations, and governments. There are even travel programs set up exclusively for people who want to volunteer somewhere in the world.
It’s important for patients to know that they can have a positive impact on other people. Sometimes the most healing we can have is reaching out and connecting with somebody else. [It] feels wonderful to help somebody else.
Linda Rio, MA, LMFT
Simply do an activity you enjoy
Hobbies become our hobbies for a reason. Pastimes become favorite ways to spend our time for a reason, too.
When you have a “thing” it stirs something within you that other pursuits just don’t. They connect you to something larger than yourself. And again, this could mean a thousand different things.
Whether it’s yoga, jogging, playing with your dog, fishing, painting, dancing, reading, cooking, jumping rope, or weaving baskets, one of the kindest, most fun things you can do for yourself is to find the one activity that makes you happy to be alive and dive into it heart and soul.
This is another broad category ways to enhance spirituality, but it’s a powerful one that can enhance all aspects of your life. This refers to the way you move through the world, exuding and receiving positive energy (call it karma if you like) so that the people around you feel it and, hence, you do too. This can include:
Releasing judgement: Freeing because you’re not assigning labels or creating positives and negatives.
Performing regular acts of compassion: Being kind opens your soul and can create a circle of kindness that extends far beyond our own small circle.
Letting go: Deciding to let go, accepting change, not being attached to outcomes, surrendering desires, accepting the present, relinquishing the ego, and moving on with grace are all ways to let go. When we let go, we release tension, create ease, and clear a path for our true nature to shine through.
“What I do when I’m having a bad day is I try to let it pass through me. I try not to hold on to the pain or the disappointments or the frustrations. I try to let go because letting go makes me stronger. In order to be stronger, I have to let go of the concept of strength.
I become stronger by becoming more authentic, by living the life that I can live as best I can, and not holding on to other people’s pain as I try to help them with theirs.”
-Shawn Atchley, D.Min, M.Div, MSW and acromegaly patient
Practice gratitude: This is a great way to put yourself in a good spiritual place. Many people start and end their day with gratitude. You can keep a gratitude journal, or simply make mental notes of what you’re grateful for on any given day. Gratitude fosters perspective, reminds us what is working in our lives, and brightens our mood.
I start my morning every day with gratitude. I separate things into categories: physical, mental, emotional, spiritual, financial, social, and I really concentrate on the all the wonderful things that I have. Both the things that I receive in life and the things that I have to give, and it reminds me that I do still have a lot that I can give and I do still have a lot that brings me joy in my life. Starting my day focusing on that makes a huge, huge difference.
Elianna, diagnosed with acromegaly in 2013
Make affirmations: Repeating daily affirmations can ground us in who we are, what we’re doing in this life, help us set goals and to achieve them, and strengthen love for the self. In a way, it’s talking directly to the negative inner voice many of us have, telling us we’re “less than.” Affirmations remind us that we are anything but, and can lead us to a place where deeper, more frequent connections are possible.
Unplug: Technology is terrific, but too much of a good thing is never great. From social media and nonstop texts to streaming movies and taking pictures of our lunch, putting all of it aside for a certain amount of time every day or every week also leads to a lot of terrific things.
It limits distractions, focuses you on the present moment, helps you become more mindful, and forces you to engage more fully in your surroundings. Try it. You’ll be amazed.
Think positively: Living from a happier place where the glass is always half-full you become more relaxed. It also gives you a brighter perspective on the world and other people, making it easier to make those connections we all seek.
This is a relatively new type of therapy that focuses on the application of spirituality into an individual’s day-to-day life. Spirituality therapists can assist in finding balance in life, reconnecting with a higher power (whether that be God, the Universe, nature, etc.), and dealing with crises of faith.2
Some people reach out to a spirituality therapist to better develop their personal ethical code. Others may want to resolve disagreements within their belief system, reconnect to their lives, establish or re-establish meaning and purpose in life, affirm and actualize their existence, and overall be at peace. 2
No matter the specific reasons for seeking the help of a spiritual therapist, the bottom line is that this type of therapy may be helpful in raising your awareness of the universe, enhancing your connection to it, and attaining a feeling of harmony with it. 3
No matter what flavor of spirituality works for you, we hope you find the information in this piece helpful. In the end, as you no doubt sensed from reading all of this, spirituality is about connection: to ourselves, to the universe, to nature, to each other, to the great mystery that is life, and the search for ways to live it as best we possibly can.
“God only gives you what you can handle, you know.
[Having acromegaly] has expanded a lot of things. I might be forgetful. I might sometimes get confused. But my intuition is the sharpest it has ever been.
As far as energies and feeling people or even situations, I can feel something coming ahead of time. [I’m] very in tune with energies.”
-Peter, diagnosed with acromegaly in 2015
How do you incorporate spirituality into your life as a person with acromegaly? Join us on social media to share your thoughts and ideas.
HELPFUL TOOLS AND RESOURCES
Chronic Illness, Spirituality, and Healing: Diverse Disciplinary, Religious, and Cultural Perspectives. Edited by Michael J. Stoltzfus, Rebecca Green, and Darla Schumm.
National Organization for Rare Disorders (NORD)
- Koenig, H., King, D. & Carson, V (eds.). (2012). Handbook of religion and health. Second edition. New York: Oxford University Press.
- Jenna Jarrold, MS, LAC, NCC. Spirituality Therapy. TherapyTribe.com, June 4, 2019.
- Spiritual Support. GoodTherapy.com. 11-27-2018.