The importance of compassion for Fabry patients and caregivers
By suffering with others, we can help lighten the load they carry
Sitting by the stone hearth at La Madeleine restaurant, two friends and I vulnerably shared our thoughts over soup and salad.
The three of us savor life updates, laughter, and counsel. We have many things in common: We are committed Christian women, each with four sons and a daughter. We are teachers. We parent kids navigating chronic health issues. We fight for deep relationships within our families. We have experienced ups and downs in our mental health. So, with all this commonality, our conversations are raw and real.
One friend shared that she has sunk into a deep depression and is battling the shame and guilt that come with it. With tenderness and tact, my other friend told us to imagine carrying hundreds of pounds of rocks in a pack on our back. Then imagine feeling shame or guilt because our back hurts.
“Of course your back is in pain,” she gently pointed out. “You are carrying a tremendously heavy weight everywhere you go.”
The heavy weight of Fabry
As I let those words sink in, I thought of some recent comments I’ve received from Fabry Disease News readers. I have wished to personally connect with each of you and know your story. I would love to chat over soup and salad, but since that’s not possible, let me start by saying thank you for taking the time to read my column and leave a comment. I appreciate each reader and the unique life experience you bring to the dialogue about Fabry disease. Hearing from others walking the Fabry road is encouraging and powerful for my family and me.
A common thread among readers — both patients and caregivers — is that you, too, are carrying a heavy weight. My heart broke as I read some of the comments. I am sorry for every heavy-laden man, woman, or child who is isolated from family or support. Fabry disease is a big load of rocks to carry, even with help. Please reach out, speak out, and cry out when you need to. There are people who will walk with you beneath the burden.
Another challenge often echoed by readers is that parents feel lost in the storm of Fabry. Considering the particular difficulties shared by those of us raising children, teens, and young adults with this lysosomal storage disorder, it helps to hear from other parents who understand. We all worry about making the right decisions, get frustrated with the lack of answers, struggle with what to say, and even worry about the financial impact of this rare disease on our families.
Still, despite the circumstances, every parent raising a child with Fabry must offer compassion. Compassion, which entails more than just pity or empathy, is vital. I remember learning that the Latin root “com” means “with” and “passio” means “suffering.” A 2018 article published in the Journal of Pain and Symptom Management notes:
“Although the Latin root for the term compassion (compassio) was often used interchangeably when translating sympatheia from ancient Greek in the 16th century, the concept originally held a deeper meaning and religious connotation that was rooted in love and the spiritual connection of living beings through a Higher Power, God, the Universe, Nature or a Life Force.”
With this in mind, we may not be able to mitigate our loved ones’ pain, but we can suffer with them. Caregivers are co-sufferers, and our job is not only to feel sad for or encourage, offer guidance or let alone, manage symptoms or seek a cure, but to sincerely suffer with our children. It is invaluable to the person suffering to be connected with others who suffer alongside them every single day.
I will close with this, dear reader: My prayers are with you who suffer with Fabry, that you may lean on grace and find others beside you who recognize the weight you carry. I pray that you never feel you must face the anxiety and panic of your condition alone. My prayers are also with fellow parents, that you may overflow with the necessary compassion to suffer alongside the children you love.
Note: Fabry Disease 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 Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.
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