I paddled out with my boogie board, eager to ride another small wave to the shoreline. But this time I had gone too far.
I was eleven years old and it was the first summer my mom let me wear a two-piece swim suit. I had just started reading the newest Harry Potter book on my flight the day before and then all evening until it was time to crawl into bed.
Now, I was beneath the placid and glistening surface of the Pacific. The Velcro wristband dug into my skin as a sheet of tie-dyed pink Styrofoam bobbled two feet above and the undertow ripped away my brand new bikini.
Grasping and gasping, I caught a quick breath of air before being pulled back down. The pattern repeated again and again. A glimpse of hope and then helplessness. The salt burned in the back of my throat.
I was visiting my grandparents at their beach-side condo. A few hours earlier, I had set off the ocean alone, as I did every summer, promising to return when the sun was high in the sky for lunch. No one knew I was drowning.
When I had all but given up hope, I felt something dense brush up against my arm, and then my torso. A stranger’s arm wrapped around my waist and I could breathe. Then, I felt hands all over my body. My torso, my armpits, then under my feet. The next thing I knew, I was sitting atop the rocky pier, arms crossed over my bare prepubescent chest, disoriented and ashamed.
Two young men looked down at me with concern, before pointing toward the shore and walking away.
A common experience among those with chronic ailments is a sense of invisibility. Friends think we’re lazy. Our medical charts are filled phrases like “psychosomatic” and “findings insignificant.” Try as they might, family members don’t understand the pathalogical fatigue that comes after compounding thousands of sleepless nights, and their words of reassurance feel painfully out-of-touch.
Chronic illness doesn’t look like drowning. There is no obvious struggle. Despite looking us square in the eyes, no one knows that we are drowning.
When one feels invisible, they may be inclined to burrow away, further out-of-sight and out-of-mind. For it is far less painful to be alone than to have someone glance in your direction and not recognize your suffering. Yet, without being seen, there is no hope of rescue.
I keenly remember the first time a doctor invited me into his office and, despite my quivering voice and swelling eyes, listened intently without interruption. After nearly five years of choking on salt water and feeling that sharp plastic dig into my wrist, somebody finally saw me.
That doctor didn’t provide a diagnosis. He couldn’t give me an answer. And he wasn’t sure what was wrong. But he told me what I had been waiting years to hear: I believe you.
And, in that moment, I was no longer invisible.
As a child, two strangers saw me flailing fifty yards offshore and saved my life.
Twenty years later, I was once again struggling. And once more, I was seen. A caring doctor hoisted me up onto solid ground. He gave me permission to be unwell without a clear cause. In many ways, this less climactic salvation was the more important of the two.
Several years have passed since my doctor nodded in empathy and, once again, the water is slowly rising. The undertow is stealing the sand from beneath my toes and I’m too fatigued to tread water. But I’m no longer overcome by fear nor shame. I’m no longer cloaked in a sheath of invisibility. To be seen, even just once, has the power to reignite our sense of self-worthiness and restore our hope in humanity.
I now understand that we are all bound to experience difficulties in life. When faced with adversity, not only is it alright to accept help, but we are allowed to ask for it. The American ethos is one of independence and overcoming. While both are strong pillars in their own right, I’ve come to discover that humility and human connection are just as important, if not more so. We need one another.
When I find myself slipping into loneliness and despair, I can still feel those strong and supportive hands lifting me to safety. When I begin wondering whether my symptoms are all in my head, I can still hear the words echoing in my mind: I believe you. And, all of a sudden, I am no longer invisible.
Have you ever been recognized when you felt helpless, hopeless, and alone? If so, how did that experience impact you?
You can find more from me on my personal blog: https://existentialergonomics.com/
The Heart of the Matter 
Thank you for sharing this
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Not knowing, not getting a diagnosis – not being able to diagnose a chronic illness has to be one of the most isolating feelings – you feel lost – at sea to continue with your example of drowning. Fortunately my doctor always believed in me so I’ve never had to deal with that invisibility you’re describing to the same extent – but I certainly feel your pain. I think it also hurts when people try to dismiss the fatigue as just tiredness – when its not, its so much more than just feeling tired – its all encompassing.
I just wanted to let you know you’re not alone (I can’t send hearts from my computer – but I’m sending one)
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Thank you for your kindness and empathy, Brenda. ❤️ I so glad to hear that your doctor believed you from the start. While it doesn’t alleviate the symptoms, it’s so powerful to have someone take your side and root for your recovery. ❤️❤️❤️
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Definitely. Unfortunately there is no ‘recovery’ but you learn to live with the condition
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Your analogy is a powerful one. I can relate to the pain of being invisible, having lived with an invisible disease these past nine years. I had one doctor in ER spend 12 hours trying to find the cause of my symptoms, and then pulled up a chair beside me and went over every test and result, reassuring me she would not give up on me.
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Thank you for sharing, VJ. I’m so sorry to hear you’ve had to deal with an invisible disease for so long. 💔 We need more doctors like the one your encountered in the ER, who show they care through both words and actions. Those are the experiences that stick with us and keep up going.
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😘
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Sending love, love, love this morning Erin…well, every day. I can’t think of anything more frustrating…at a time of great need…to not be seen, heard, received. I’ve felt that way, at times, related to advocating for others who had seemingly invisible, imperceptible health challenges and it’s torturous. Every time you write/share I’m struck by your resilience and yet I know it’s a well that can run dry. Sending all I can to fill you up, give you strength and resolve. xoxoxoxox ❤❤❤
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Thank you, Vicki! ❤️ As debilitating as chronic illness can be, I would argue up and down that the pain of not being seen is worse. Everyone is fighting their own battle, medical or otherwise, and I’m continually struck by how powerful it can be to simply notice someone–to ask if they’re okay, listen to their plight, and say that you believe them. Thank you for all the love, Vicki! ❤️❤️❤️
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You are so welcome.
Love, love, love. ❤️❤️❤️
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I believe you.
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😊😊😊
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Have you ever been recognized when you felt helpless, hopeless, and alone? If so, how did that experience impact you? Once a doctor took the time to listen to my worries and tell me it’d be all okay. I was worried about someone else, not me, but he was reassuring to the point that I left his office buoyed with hope. He was right, btw. All unfolded as it should.
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Ally, thanks for sharing. I love hearing that. It’s truly phenomenal how powerful listening, empathizing, and offering reassurance can be. ❤️
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Being heard brings with it hope. When we suffer with unseen trauma and pain we need hope. I am so glad you felt heard. It becomes more evident with the passage of time we must advocate for ourselves and sometimes it can be so difficult and tiring to do so. You are heard and believed and I pray you find and hold onto hope.
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Maggie, you are so right: being heard brings with it hope. ❤️ Yes, it’s so true that we often need to be our own advocate, and yet it can be often be so challenging. Thank you! I do feel heard and believed, and I am holding onto hope. This little community so filled with love and support, and I’m truly blessed to be here. ❤️❤️❤️
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I feel the same way about this place. ❤️
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It makes such a huge difference when just one person not only listens but also really HEARS you and believes you unconditionally. On many minor scales I’ve been the non-believed individual so I really try to simply take in what others share with me, acknowledge it and be in their world, available if they want that. You are not invisible Erin.
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Thank you, Deb. ❤️ I’m so sorry to hear that you’ve had to experience being disbelieved, but I’m heartened to hear that you’ve taken that as a lesson to be more present with others if that’s what they need. Doing so, you’re making a difference, Deb. ❤️
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Wow, I love these sentences, ” I’ve come to discover that humility and human connection are just as important, if not more so. We need one another.” Yes! Those are thing things that help save us from drowning, real and metaphorical. I believe we can more easily survive the tough things in life — if we are heard and feel supported. You have written about this so beautifully, Erin.
Bless those boys that saved you, the doctor that heard you, and bless you as you continue to speak truth to invisibility. I’m sorry you are feeling the water rising again with your health – but I hope you feel buoyed by others as you face this adversity!
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Thanks, Wynne! In my youth (and ignorance), I was stubbornly independent, but quickly learned we can’t go far on our own. It’s not just practical services and tangible goods, but empathy, understanding, human touch, and support – they make such a difference. I absolutely feel buoyed! This little community you and Vicki have built is filled with the crème de la crème of humanity–kind, loving, supportive, open-minded, and joyful people. It’s such a pleasure to check in here each day. 😊 As a teenage, I used to pluck business, finance, relationship, and other “adult” books from my mom’s bookshelf. One of the impactful lines was from Leo Buscalgia’s Living, Loving and Learning: “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” It’s been my all-time favorite quote for 15-20 years, and it’s what I see happening here every day… acts of potentially life-changing kindness. 💕💕💕
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What a great Leo Buscalgia quote, Erin! And I’m beyond thrilled that you see that happening on Heart of the Matter. Of course, you are a huge part of that so on one hand, it’s no surprise!! ❤ ❤ ❤
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The first thing I thought of after reading this was the tremendous impact one person can have on another. We have so much power in our actions and words, and each day we produce a kind word, a thoughtful gesture…or just plain listen…can not only be appreciated by another, but it might have impact on the rest of their day, their week, their year, their lifetime. One never knows what situation or scenario they might be in each and every day when they can make another individual feel like they are being heard, being understood, and most certainly being seen.
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Bruce, that’s precisely the thought I was hoping to nudge readers towards! We all have the power through our actions and words to affect others. If we are conscientious, we may have a lasting impact. On the other hand, if we’re thoughtless or rushed, it make make someone who is struggling feel even worse.
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You have written beautifully about how important it is to be seen and how community is necessary for our well being. We need each other. We can tell when someone really sees us and I know how that has made me feel and I want to be that person for others too. We all long for intimacy … to be seen, heard and known.
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Thank you, Nancy! Yes, it’s so true that we can tell when someone *really* sees us, and it’s certainly a feeling I strive to give others, too.
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Thanks for sharing your very traumatic story with us. I am recommending a book you may find helpful in your journey of healing. RESETTING YOUR EMOTIONS by Devi S. Nambudripad M.D., D.C., L.Ac, Ph.D. (Acu)
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Thank for for the recommendation. I read the synopsis and while I’m often skeptical of similar types of books, it looks promising so I check it out. 😊
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The case studies provided throughout the book are very interesting. A family member who had an emotional trauma in his pre-teen years was treated with NAET and his health problems as an adult cleared. Wishing you only the very best!
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That sounds fascinating and so enlightening! Thank you again for the recommendation.
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