I made a promise to myself that I would be as open, honest, authentic, and vulnerable as I possibly could be in writing the posts for this blog, and I am going to continue to honor that promise to myself. Here it goes . . .
The last 10 days have been the most difficult 10 days of this journey that I have experienced in a long time. There wasn’t any one thing that made it one of the most difficult stretches of days; there was a tidal wave of things. There were numerous setbacks. (I won’t go into the details, because that is not the point of this post. You can believe me when I say that it was a shitstorm.) I have become really great at moving through the things that come my way, but when it all happens at once, it can feel overwhelming. And, it takes a lot for me to feel overwhelmed at this stage in the journey, so that should give you a decent idea about how this 10-day span went.
Last Wednesday, in the middle of the numerous setbacks, I wrote a blog post. Unbeknownst to me, one of the images in that post was not showing up for the people reading the post. The missing image was glaringly obvious to the readers, but from my end, the post looked normal. I had no idea that the image wasn’t visible to the readers. Nine people read that blog post in the short amount of time before my husband was able to read it over his lunch break, and none of those nine people (whose identities are unknown to me) decided to send me a quick text or direct message to tell me that one of the images was missing. When my husband read the post, he messaged me to alert me of the problem, and I fixed it.
In that moment, I felt betrayed by the people who read this blog — not because the readers didn’t alert me about a missing image, but because of the bigger issue that moment represented. I have gone to great lengths to share my story in the hopes that it helps others feel less alone. I have shared things that I would prefer not to share, but I did it to help others. And, to then not have any one of nine readers contact me prior to my husband to help me out in the simplest of ways was hurtful. It seemed like it was too much to ask for any of you to send me a quick message to help me with something as simple as that. How is that too much to ask? In fact, how is anything I have asked of you over the last 14 months too much to ask?
Let me be very clear: The real issue here is not that readers didn’t alert me about a missing image on my blog post. Not taking 10 seconds to alert me about a missing image is a microcosm of the real issue that has been happening over the last 14 months since I started this blog. As I have shared with you some of the most authentic parts of our life in a deeply vulnerable way, you have not shown up for us in the simplest of ways. We have not asked for much (see How to Support Us and the Support page of this blog). We have asked you to spend less than 30 seconds of your life to reach out to us on a regular basis in support of us via text or direct message. We have asked that you let us know that we are not alone, that you care about us, and that we are loved.
(image credit: unknown)
Over the last 14 months, I have had what few connections I still had after 20+ years of living alongside an invisible, complex chronic illness slowly fade away. I used to have a few people check in with me on occasion. How many people have regularly reached out to me so far in 2024? One. A friend who lives in Grand Junction, Colorado. That’s it. No other family members or friends have made a consistent effort. And, when I asked you to reach out to my husband when he was really struggling 6 weeks ago, how many people do you think reached out to him? Zero. None of his family members or friends and none of my family members or friends. And, these are people who supposedly love us.
I know that I am not alone in experiencing a lack of support from others as I live alongside an invisible, complex chronic illness. Many people who live alongside a chronic illness face this situation, and I know the main reasons behind it. I have been fascinated with why people behave the way they do for as long as I can remember, and I have had many of my theories confirmed by our therapist who specializes in chronic illness and trauma. However, it doesn’t matter in this moment why it happens. What matters is how your lack of support makes me feel. I feel like I don’t matter to you. It feels like the only person who would care if I died is my husband. And, that is a terrible way to feel.
Thankfully, my mental health is stable, but I do understand why people who have mental health issues see a steep decline in their mental health when they are living alongside an invisible, complex chronic illness. Our society, as a whole, is terrible at supporting people through difficult times.
To be clear, I don’t need excuses. If you truly love and care for us, then what I need is changed behavior.
Brutal. Feeling like I don’t matter. How inept people are at supporting others through difficult times.
Beautiful. My amazing husband. Our amazing therapist. Being as open, honest, authentic, and vulnerable as I can be in this blog.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 