7. When the emotions of living with a rare disease finally hit

I went out to lunch with a friend some time ago, and over kale salads and mineral water she asked “So, how are you doing?” I took that as my invitation to lament when I think she may have been looking for something a little more uplifting.  So I responded with how isolating it’s been living with LAM, my rare lung disease, and how every sharp pain feels like another lung collapse, and how I’m so tired some days that I have to lie down to take a nap.  And then I wept soft, unexpected tears.  My brief public display of emotion left me feeling embarrassed and maybe even a little ashamed, which is probably why I quickly said “I’m sorry” after regaining composure.

While I may have felt self-conscious of my tears, in that moment, those tears were a genuine expression of how LAM was impacting my life. And yet somehow I felt the need to apologize.  Perhaps it was because I sensed my friend’s discomfort, or maybe it’s because I grew up in a culture where crying in front of others was seen as a sign of weakness or worse, emotional instability.  Or maybe apologizing was a way to reign in the tears because I wasn’t ready to release the floodgates of dealing with my feelings over LAM, certainly not over kale salads.  Regardless of the reason, I know that those tears left me feeling a little less stoic, and a lot more aware of my grief.

Not long after that lunch, I flew up to Maryland for the first time to participate in a study conducted at the National Institute of Health (NIH) to determine the disease process of LAM.  After four days of being poked, prodded, scanned and examined, despite my gratitude for the opportunity to participate in the study, I felt heavy and laden with all the newly acquired knowledge about LAM.

I was on a flight back home that afternoon and before the plane even took off, I started to cry.  Big, fat, messy, and inconsolable tears that leave you looking battered.  I was overcome with a sense of despair, and in the absence of a tissue, I used my sweater sleeve to repeatedly wipe my face off raw for the duration of the flight.  And while I had a slightly larger audience to witness my crying, they were all strangers to me, so I released the floodgates – without apologies this time – for an impressive two and a half hours as I gave in to overwhelming sorrow.

As messy as that whole experience on the flight back home from the NIH was, the truth is I felt so intensely alive after crying out in grief.   If you read my blog Here’s What Not Coping Looks Like, you’d know that I over scheduled my life in avoidance of this disease, which left me devoid of all feelings – good and bad.  After that flight, for the first time in a long time, I actually felt my heart ache from the sadness, anxiety, pain and all the other toxic emotions that I locked away.  It’s as though my emotional batteries were recharged after being numb for so long in reaction to LAM.

While I haven’t quite had a marathon crying session since that flight, I do find myself tearing up more often in moments that touch my heart – and not just moments of sadness, but those of joy and gratitude as well.  I guess a “jump start” to your emotional batteries will do that.

Sometimes just sitting in the car listening to a song will trigger nostalgia and make my heart swell as I cry.   I’ll tear up when I go for a long walk or run on occasion, usually because that’s when I do some of my best thinking.  I cried when my son told me that his entire class prayed for my well being when I was in the hospital because of a collapsed lung.  The other day I told a friend about my mother who’s battling cancer, and how we often hold hands in silence and while I sometimes hope she’ll impart words of wisdom during those moments, perhaps the unspoken lesson she’s been trying to teach me is to learn to be still.  My friend wept.  As did I.  This time I didn’t apologize for my tears.

5 thoughts on “7. When the emotions of living with a rare disease finally hit

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  1. You’ve described so eloquently the feelings of many of us with chronic disease. Thank you for the reminder that we don’t have to keep it together and in fact we are much more able to experience both the joy and the pain in life when we let it out.


    1. Thanks Lois. I believe strongly in the dualities of life, especially when it comes to joy and sorrow, and hope and despair. And when you allow yourself to fully experience one, then and only then do you open yourself up to experience the other.


  2. Raw and honest! We hold so much in to be strong for those around us while deep in our heart we hurt, we grieve. You needed to release your flood of emotions. You did great! Reset your loss and you will again open the gates later. ❤️

    Liked by 1 person

  3. This is a beautiful post Nisha – thank you for beautiful blog. I sincerely hope that we experience this kind of emotion and self-expression when we are at LAMpsosium LA, where coping and mental well-being are a key priority for discussion.
    Thanks again and again — Sue

    Liked by 1 person

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