You see her posts on social media. The photos. The people. The places. Goodness, she’s already traveled over 13,000 miles in 2022 alone. On the surface her life looks fun. Her life looks exciting. She always seems to look happy and healthy. She looks like she is at the top of her game.
Yet what you can’t see does hurt her.
51 years-old and recently diagnosed with Gastroperesis, within a matter of months life as I had known it has taken a 180 degree turn. Instead of walking 6 miles per day, I’m managing dizzy spells and struggle to keep my balance while standing. Intense stomach cramping oftentimes leaves me in bed most of the day. My energy level and weight is currently at an all time low. Bone broth, popsicles and ice chips have become my best friend. Now, my usual FaceTime/Zoom sessions with clients have been replaced with daily phone calls to specialists and/or “in person” visits with various doctors/GI specialists, etc.
Nearly one year ago I felt… “off.” Months came and went and my symptoms progressively worsened. The satiety (feeling of fullness) constant nausea and abdominal pain slowly has pulled me away from my career and the things…as well as PEOPLE I love. For now, restaurant dining, social commitments/dates/plans (for the most part) have been thrown out the window. It’s been nearly impossible to commit to professional/personal engagements. Needless to say, it’s a very lonely place to be.
When others ask about my diagnosis, it’s incredibly difficult to explain. Gastroperesis is relatively new in the medical world, with so much still unknown and a limited amount of specialists within the motility field. Early in my own journey, locating and securing the right motility specialists has been daunting and proven to be a very lengthy process. Thankfully, I have an incredible fiancé who has taken much of this weight off of my shoulders. Nonetheless, I foresee a long journey ahead, reminding myself daily to always take joy in the little things.
Like many other autoimmune disorders, Gastroperesis is an invisible illness. Those who see me, see the outer shell as looking pretty good. Healthy. Normal. Ironically, what’s happening on the inside (or in my case, what’s NOT happening) is not necessarily so pretty. Being diagnosed with this invisible illness has left me to deal with friends, family members, and even medical practitioners who may question whether I’m truly sick. Fortunately, I’ve stayed proactive, researched and demanded the necessary tests which ultimately lead to my Gastroperesis diagnosis.
What causes gastroparesis? Gastroparesis is caused when your vagus nerve is damaged or stops working. The vagus nerve controls how food moves through your digestive tract. When this nerve doesn’t work well, food moves too slowly or stops moving. I’ve found that the best way to explain my diagnosis to others is by sharing the short podcast link below:
Now, if you have an invisible illness, you likely know all too well how difficult it can be to get a diagnosis. Many of these conditions can not be diagnosed with a simple blood test, and often require the process of elimination and a patient’s reporting of symptoms for a diagnosis to be made. Unfortunately, far too many patients with invisible illnesses have come to learn that finding that trifecta in a physician can be like finding a needle in a haystack. It’s one of the reasons the average diagnosis period can take years. As mentioned above, I’m grateful for my own research and persistence. Yet I too felt symptoms for well over a year prior to my diagnosis.
From my perspective, I don’t believe anyone with an invisible illness is necessarily looking for sympathy. That’s certainly NOT the reason for this blog. I believe EDUCATION IS UNDERSTANDING. And understanding leads to COMPASSION. Heaven knows that our world could use more understanding and compassion.
Ironically, one of the most difficult aspects that I’ve experienced within my own journey and since the diagnosis (outside of the pain, discomfort and my quest for a better quality of life) is the lack of understanding by some. Making the decision to step away from CA Image Consulting (hopefully temporarily) was not at all easy. Mentoring has always been my passion and let me just clarify and highlight that I have worked with an abundance of incredible clients!
However, I tend to wear my heart on my sleeve. Thus senseless and hurtful words by a few who I considered dear friends have sadly cut deep. I’ve been called “unprofessional” for making this very important decision to preserve my health. I’ve been scolded and even bullied, “We all are going through something and even I could die tomorrow.” As an individual who has always CHOSEN kindness over using careless words, I would have hoped for more respect. More…compassion.
That said, invisible illnesses are nothing to joke about and they are oftentimes difficult for others to understand. Heck, I’m even trying to wrap my brain around what I’m currently experiencing. It takes a toll not only on the body and mind, but it also takes a toll on friendships and/or relationships. This is not an easy pill to swallow (pun intended) and I’ve learned that some people will stay while others will go.
Personally, I’ve found a great benefit both informationally and mentally in connecting with other’s like me through a discussion board. I’ve learned much and have received plenty of useful information pertaining to Gastroperesis. The site includes 3 million members, 15,000 doctors, 86 million data points and targets nearly 700 conditions!
If you’re amidst your own journey with an invisible illness or new diagnosis, I strongly encourage you to take a look at the website. This particular site is a place to share experiences in an organized way and discover what can work best for each of us.
Never in my wildest dreams did I foresee this 180 coming. However, I’m working very hard every day to take this new journey a full 360 and forge ahead stronger. Most days I’m not at my best yet I still believe the best is yet to come. 52 is around the corner and I fully intend to live it up abundantly.
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