The Beauty of Being Seen, and Seeing Our Caregivers, Too

One songwriter’s comforting, yet uncomfortable take on chronic illness

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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The other day, I was heading home from my intravenous immunoglobulin (IVIG) infusion, grateful to be back on schedule after my recent insurance delay. I was mindlessly singing along to whatever was playing on the radio, which turned out to be Matchbox Twenty — and I realized that it wasn’t so mindless after all. Just as I’ve found my heart expressed through Alanis Morissette’s album “Jagged Little Pill,” I felt it here through a pop-rock song from 20 years ago.

“I’m not crazy, I’m just a little unwell
I know, right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me.”
— Rob Thomas

Though Thomas was writing about his own experience with anxiety, “Unwell” resonates with so much more. It succinctly speaks for sarcoidosis warriors like me: Though sarcoidosis is considered an invisible illness (“right now you can’t tell”), if you look hard enough, you can see when we wince in pain, struggle to move or breathe, hold on to the wall for support, or suffer with other symptoms. Those closest are able to see this different side of us.

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There’s such a whirlwind of emotion around that, though. We often put on a brave face and hope that no one sees through the facade. We don’t want to be pitied, even while we feel pitiful. If our ruse is successful, though, it can backfire: We may end up feeling more distant, lonely, and depressed when no one understands what we’re going through (even if that’s because we won’t let them).

As much as “Unwell” seems to hit the nail on the head about chronic illness, there’s another Thomas song that hits me even harder: “Her Diamonds,” which brings me to tears every time I hear it (yet I continue to blast it on repeat).

With many rare or invisible conditions, it’s often said that you can’t really get it unless you get it. As much as we may share our stories, there is an intangible element that is indescribable; it’s truly unfathomable to most of the healthy world. But through its lyrics and video, “Her Diamonds” shows how much Thomas does get it — not only as someone struggling with his own mental health, but as someone caring for a chronically ill spouse.

The diamonds referenced here are his wife’s tears as she cries, “I can’t take no more.” He sees her hurt, frustrated, and dejected. There’s “something less about her” as she longs for escape. It’s validating to hear that someone else sees what we so often feel, but through Thomas’ words, I also see my caregivers in a new light.

“It’s hard to see [her tears] on the ground,” he repeats, and I understand. Or at least I thought I did. “Her diamonds bring me down/ ‘Cause I can’t help her now,” he sings. That’s one of the main reasons many of us try to hide our pain, even (especially) from our closest loved ones.

That doesn’t always work, though. What I’ve learned in my journey with sarcoidosis is that, more often than we realize, those who care the most do see what we try not to show, and hear what we try not to say. And just as we try to protect them from our pain, they do the same for us.

“I don’t know what I’m supposed to do
So I sit down and I cry, too
But don’t let her see.”

I remember talking about this with my husband years ago: I’d said something about being able to function while in pain without anyone noticing, and he simply said he could see it, making my heart both grow and break at the same time. It’s comforting that he knows me so well, but disheartening that I couldn’t shield him from it.

As my “diamonds” fall, I imagine my husband speaking these lyrics, the words of someone hurting so much, feeling so helpless because he isn’t able to take away my disease. While of course I wish he could wave a magic wand and make me healthy again, the reality is that just being there — just knowing me, loving me, and holding me when I feel weak — does more for me than all the infusions, injections, pills, and creams ever could.

As much as Thomas (or my husband) says he doesn’t know what to do, it seems they’re both doing the best that a sick wife like me could ask for: They see us (and see through us), listen, empathize, sit with us, or let us be, whichever we need at the moment. And Thomas offers a realistic consolation for all of us on our darkest days: “If [we] can find daylight, then [we’ll] be alright … just not tonight.”


Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

stephen fiege avatar

stephen fiege

I see you do ivig. Has it helped you and why did they start it for you? I tried for 15 years to get this. I got approved in 2020 and wouldn't go to the packed clinics to do it By the time things settled down my heart was failing and not worth the risk. The insurance and doctors are just a racket when you have rare diseases.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Oh, Stephen, I'm so sorry you're going through this - insurance (and doctors) can surely make things harder for what's already a difficult disease to manage. I first tried IVIG (for sarcoidosis-associated small fiber neuropathy) in 2017, but had an awful reaction to it. It took 2 years, 7 doctors, 4 medical centers, 3 cities, and 2 states to come up with plan b (which was more like plan zz), and finally doctors at the Cleveland Clinic suggested ways to make the treatment tolerable. It has been very helpful, but definitely not a cure-all for all of my symptoms. Still, I'm grateful for it. I hope that things turn around for you, so that you can pursue the treatment options you desire. YOU are worth that.
~🦋

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