leading-with-chronic-illness

Leading Others Along the Way

On Monday, I discussed how we inadvertently become leaders when we go public with our chronic illness diagnosis. We may not ask, nor want the responsibility, but it inevitably happens. Therefore, we face the questions: should I lead? Do I want to? and what example should I set?

Living with a chronic illness in the United States is becoming a more common occurrence. Because of this uptick, it is becoming more common to know someone affected with a chronic disease. Let’s reflect before your diagnosis for a moment: with your symptoms, did you go online and search for answers before visiting a doctor? If you knew someone with the disease in the results, did you approach them with questions?

So often, when I answer questions about my MS to those experiencing similar symptoms, do I hear how scared they are. There’s a desire for reassurance that they don’t have MS, or that it’s not a death sentence. People are seeking a connection with a person living with an illness that is not in search results. As someone who is out with my diagnosis, my role is to comfort and inform. 

I can, as can you, choose not to take on this role.  

We do not owe anyone answers about our illness. We can choose to refuse to answer, advocate, or inform about the disease. Yet, it is vital to be aware that when we go public with a chronic illness, we will continually field questions until others understand our stance on the matter.

If you choose to take on the role of “local” leader and “expert” on your disease, I wanted to write this post with you in mind. 

What are my Responsibilities?

If you’ve decided to be public with your illness and accepted a leadership role, there’s a set of unspoken responsibilities that come with it. I spoke briefly about this on Monday. I wasn’t aware of all of these responsibilities when I first started blogging about my MS.

As I went along in my journey, I saw good and bad examples of advocacy. As someone out with their disease, it’s imperative you set yourself apart from those who are out for the attention. You will find that there’s always someone out there who is a poor advocate for your illness. They post sensational images on social media, only focus on the negative aspects, and do not take the opportunity to inform others about the disease itself (just that they have it).

They might be considered inspiring by others, too, but look beyond the sensationalism and see the truth: they are attention-seeking and not informing. Be more responsible and educate others about your illness. The ones who are flashy and irresponsible make more work for the rest of us, so it’s important you help the cause rather than hinder it.

I want to share the responsibilities we undertake when we go public with our illness and become a token advocate for others. 

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Book Review: Waiting: A Non-Believer’s Higher Power

I’ve never been Marya Hornbacher’s target audience. I’ve never had an eating disorder, never diagnosed as bipolar, and I’ve never had to work to overcome a substance addiction. The closest I can come to her experience is getting diagnosed with OCD and learning to come to grips with my addiction to anger.

Twice in my life, I’ve found myself reading her books.

I first read Wasted back in the early-2000’s, possibly while still in high school. I went through a morbid stage, where I read a lot of real-life stories of those battling eating disorders. Her book was one of many, and I remember enjoying her writing style.

When I started searching for books to read for this month, books relating to a higher power, I wanted to go a non-traditional route. I tried to find a book told from a nonbeliever’s perspective. But not your typical atheist text, one filled with anger towards a particular higher power. I wanted one that examined if you could be spiritual without a higher power.

Marya’s book, Waiting, came back as a top result, and since I recognized her from Wasted, I decided to give it a go. I did not read a summary, nor did I research beyond the title, subtitle, and author. I placed it on hold from my local library and waited. It was a shock when I started reading it and realized I was not the target audience, again. Marya’s book is for people in the process of recovery who do not believe in a higher power*. But given how some popular recovery program’s require a higher power to work through the steps, there can be anxiety surrounding a lack of belief. Marya’s book fills that gap and provides comfort and assurance that a person can complete a program without belief.

Granted, it was my fault for not researching the book. I judged a book solely by its cover and as a result, found that it might not be for me.

But the book was for me. I may not be in recovery for substance abuse, I am in recovery for some equally destructive behaviors. Marya had plenty to say that applied in my own life, primarily as I work through the process of self-acceptance, and stepping outside of my addiction to anger.

So it ended up being a beautiful accident to read Waiting for this month’s book review. 

What follows is my review of a book I chose on my own. I did not receive any compensation for this review.

Book Information

Title: Waiting: A Nonbeliever’s Higher Power
Author: Marya Hornbacher
Date Published: 2011
Publisher: Hazeldon
Pages: 137
Genre: Spirituality/Recovery

Goodreads Link
Amazon Link (non-affiliate)
Official Book Website (non-affiliate)


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Positive Chronic Illness Blogs

As we get towards the end of summer, and the end of a month focusing on positivity, I wanted to share some of my favorite chronic illness blogs out there, especially ones that focus on staying positive while managing their illness. Life with a chronic illness is difficult, but it’s nice to read others who have a similar approach to the disease: engage with the positive.

Please take a moment to read through these blogs and give them a follow if you haven’t done so already.

Multiple Sclerosis Blogs

  • Fight MS Daily: Alyssa chronicles her ups and downs as she manages her MS, but she always has a positive spin to offer her readers
  • Dinosaurs, Donkeys, & MS: I love following the adventures of Heather and her “donkey” dizzy as they journey through life with MS. Through Dizzy do we get a positive perspective of living with MS.
  • Tripping Through Treacle: The name alone promotes positivity, as treacle is sweetness in the UK. Jen works to educate people on life with MS from a positive and honest perspective.

Chronic Illness Blogs

  • Invisibly Me: Caz pours everything into this fantastic blog about life with an invisible, chronic illness. You’ve seen her comment frequently here, always something sweet and positive to add to the conversation.
  • Crafts, Chronic Illness, & Adulting: Coping with Chronic Fatigue Syndrome, CC&A seeks to educate readers on life with an invisible illness and fatigue. She also shares her artwork and crafts. What drew me to her blog is her humor and approach to life.
  • Life with an Illness: Mackenzie also chooses to approach her chronic illnesses (which include Lupus, Celiacs, and Fibromyalgia) with positivity and never giving up as much as possible.

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Featured photo credit: Canva


Recipe Friday: Gluten-Free Pizza Crust

For the first Friday of Foodie month, I asked Michelle Melton, of Michelle Melton’s Photography, to share one of her favorite weekend recipes. She graciously shared her thoughts and recipes for gluten-free pizza packets (for convenience) and a favorite gluten-free pizza recipe.

Enjoy!


Mixes: Convenience in a box

When baking, there is nothing like a box mix for convenience.  Even after I had mastered more complicated baked items from scratch such as pies, yeast breads, and pizza crust, I still enjoyed the results I achieved from box mixes. If I was short on time, the helpfulness of just adding a few wet ingredients to the mix and then popping it in the oven was always tempting.  Whether it was pancakes for breakfast or a cake for a celebration, if I was in a hurry, I’d reach for a mix.   And mixes can make the gluten-free diet easier to manage.

My first exposure to a gluten-free diet was about 10 years ago.  Although I was familiar with celiac disease from textbooks and nutrition classes, I never knew anyone who had it. Celiac seems to be like other diseases that don’t have outward or visible symptoms; the casual observer would never know that a person has it.  This was not the case, however, for my friend of mine.  From the time I met her several years before, the one thing you could not avoid noticing was her dermatitis-ravaged skin.  Her face and neck were especially affected; she was constantly scratching.   Doctors assumed it was eczema and prescribed medications to soothe the symptoms but nothing rid her of the flare-ups completely.  Then in the spring of 2008, when we met for lunch,  the woman sitting across from me was not the friend I had previously known.  Clear-skinned and relaxed she explained that a doctor diagnosed her with celiac. It wasn’t eczema at all but a flare-up of the disease.  Once she became gluten-free, her dermatitis was under control. Needless to say, I was amazed.

I began to investigate (sort of toe tipping into the water) gluten-free recipes to see if a diet change would make managing my Hashimoto’s Thyroiditis easier.  Since gluten sensitivity causes inflammation, I was curious if at least reducing gluten in my diet would ease the stress on my thyroid. Ten years ago, however, the problem was every gluten-free recipe called for a different flour blend.  There was little overlap; one blend would not give the same results when used in a different type of recipe.   At the time, I tried making the flour blends that the cookbooks recommended but they required so many ingredients and the taste left a lot to be desired so eventually I gave up.

In recent years, it has become economically advantageous for some companies to cater to the gluten-free diet.  First, only specialty grocery stores carried mixes and already baked products but now major chain stores carry them as well.  I liked the convenience of mixes because I no longer needed a specific flour blend for every item I wanted to bake.  In some cases, the taste was still an issue but I found my favorites and used those often.  While we were not totally gluten-free, these new offerings made it easier to include gluten-free snacks and baked products in our diet.

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For the Love of Food

Food plays a huge role in my life and I could list all the cliche ways it’s impacted me.

One of my proudest moments as a child was when I cooked my parents a dinner with minimal help from my mother. I remember being so thrilled that I did most of the work myself and remembering to wash my hands after handling raw meat without prompting.

My love for food comes both as something to be enjoyed and something that nourishes me to survive. I love to look at a plate for how it’s presented to me when we’re in a restaurant, along with how good it tastes. I would like to think I am a bit of a foodie, but I am far from being obsessed. I think I have a passing appreciation over whether or not a dish is good.

I want to pass this love on to Jai, so as he grows older, I plan on teaching him how to cook and bake as soon as he’s ready. He’s already showing interest as our friend, Lady, was kind enough to pass along a play kitchen that he uses and mimics mommy.

Looking Ahead

For the month of September, I will discuss my relationship with food, how food played a role in my relationship with Ash, feeding a baby and toddler so they can start their food appreciation journey, and what to do to help foster a love of food and cooking in little ones. Every Friday will have a new recipe to enjoy that I am looking forward to sharing with everyone.

Before getting started, what are some of your fond food memories? What is your favorite dish to eat alone and a favorite dish to share? Leave your stories in the comments.


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Featured photo credit: Michelle Melton Photography