Deborah Spector

My continuing journey
Lessons From My Invisible Disease

Lessons From My Invisible Disease

“Breathe, breathe, and stop yourself from being judgmental. The person you’re focused on might have an invisible disease.”

I admit when I saw someone without a walker or wheelchair parking in a handicapped space I thought they got their handicapped parking sticker illegally. Or, when someone young didn’t offer her seat on public transportation to an elderly rider, well she was just rude!

It never occurred to me that someone had an invisible disease. In all candor, I wasn’t even aware there was such a thing. Then I developed a chronic invisible disease and discovered it was never going to go away! Talk about a total lifestyle change. Gone were the days of going to the movies or theater, being an active board member or comfortably going to a restaurant.

I am clinically intolerant of cold air, especially when I’m indoors. The cold air causes inflammation and pain in my lungs and I feel like I can’t breathe. It saps my energy and I become excessively irritable. Brain fog sets in and my coordination is compromised.

An invisible illness refers to any medical condition that isn’t easily visible; an invisible chronic disease doesn’t go away. If you live with an invisible illness you might have experienced a lot of criticism, because people believe you look fine on the outside, so you must be “making up” your suffering. Quite often you’re accused of being lazy or moody. And, you might face a lot of dismissive judgments.

“It is what it is, while it is. Nothing lasts forever. Difficulties will pass and so will the wonders; tune in to the preciousness of life. Bring this awareness into the moments of your day, tuning in to what really matters.” Elisha Goldstein, author Mindfulness Meditations for the Anxious Traveler 

I admit that at first I was frustrated, at times angry and critical of people who didn’t seem to care. Then I realized that as the very private person I was I hadn’t told anyone why I wasn’t showing up! I started to shift my perspective and take responsibility.

I have learned a lot from my invisible disease. First and foremost I needed to be empowered with my healthcare. For me that meant becoming my healthcare advocate.  According to John Hopkins Medicine, a healthcare advocate needs to clearly explain what the patient feels is needed, provide a detailed history, and take notes during the visit. I thought “that’s me!”

I wrote about self-advocacy in an earlier post:  Although focused on lung cancer, the central message is relevant to invisible diseases.

 

Important skills for positive self-advocacy

  • Research skills to learn all you can about your diseases as well as treatment options. Research helps you prepare for meaningful questions to ask your healthcare provider.
  • Interpersonal communication is important because it helps you listen to and effectively interact with others.
  • Problem-solving skills help you become an active instead of passive survivor. These skills help you create a trusted team with your healthcare providers to make needed decisions. Problem-solving involves being open-minded and inquisitive.
  • Negotiating skills create better outcomes and understanding between you and your healthcare providers. Successful negotiations make it possible for you to receive what you need as well as what you want. Done in good faith, negotiations can create a win-win towards your continued health and well-being.

 

I soon realized that I needed to create a joyful environment that made me smile, even on the difficult days. The Aesthetics of Joy, founded by designer Ingrid Fetell Lee, brings you ideas and tools for living a more joyful life backed by scientific research. She suggests some simple ways to create harmony and joy in your home, by celebrating the power of color, light, pattern, and shape to create a happier, healthier living environment. This was especially important for me on those days that I couldn’t leave the house. Inclement weather, especially high humidity and extreme cold made going outdoors near impossible. Try explaining that to your pups who relished their long walks!

I devoured Lee’s website and her book Joyful: The Surprising Power of Ordinary Things to Create Extraordinary Happiness.

  • Our mood is affected by small details – light coming in from windows overlooking something pleasing, plants on a windowsill or exploring the world around us through photos or videos.
  • Try color accents that make you smile. I’ve always liked bright colors, especially red, purple and orange. After being invited to accept an honor from the American Lung Association, I learned about the significance of turquoise for  lung and breathing difficulties. I discovered pottery and bowls already in my home and a beautiful set of my mother-in-law’s turquoise glasses and began re-purposing them. I grouped these objects into sets of 3 and randomly rearrange and move around.
  • I looked for ways to bring harmony and more order into my home. This involved some major clearing and rearrangements of rooms and furniture. I also began rearranging closets and drawers, getting rid of the clutter.

 

I reveled in the discovery of the importance of passion in my life! I soon realized that my passion including inspiring other people through my determination and dedication to feeling better. I slowly returned to riding horses, even though it was very different from my competition days in the show ring! Small accomplishments became huge!

Passion was bringing focus and joy into my life. Passion was bringing me back to the discipline I once had, discovering new friends and community and was helping me find my true self. One day I stopped having the critical conversations in my head about people’s motives and intent. I started truly enjoying my small successes! I gave myself permission to say no and to enjoy myself in ways comfortable to me.

I was rediscovering the importance of moving and breathing! I started dancing when I was in kindergarten. I ran track and began to participate in road races. I also taught exercise classes in a studio and evening adult classes at a local university. I created an award winning poster The Ultimate Stretch that Cat Schaad turned into an instructional poster.

There are a lot of health-related reasons that movement is important. According to The Mayo Clinic Health System our bodies are designed to run, jump and manipulate objects, among other miracles of locomotion. Yet we spend myriad hours sitting, either in front of the TV or a computer screen! This lack of motion compromises our physical and mental health.

I never thought about breathing until I was confronted with the possibility that I would need mechanical help if I didn’t move and learn to really, really breathe. I started exploring various forms of breathing exercises and continuously incorporate them into my daily practice.

New research explores the relationship between the pace and intentionality of our breathing, and the brain networks involved in mood, attention, and body awareness. A very interesting post in Mindful.org by B Grace Bullock, PhD, which describes how breathing controls our mood and attention.

I am constantly doing research on a wide range of topics and love finding new articles and posts that increase my knowledge and understanding. My Continuing Journey is one way I try to make a difference.

I hope you found this post  meaningful. If you care to share your thoughts or suggestions, we’d love to hear from you!

Namaste, Deborah

 

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