Learning how to decipher who my support people are
Being honest with myself has enabled me to identify people who are truly helpers
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After living with cystic fibrosis for nearly four decades, I’ve learned valuable lessons about support people.
Chronic illness is not for the faint of heart, and not everyone can hang out in the uncertainty with me. I’m so grateful for those who can, and who have shown me what true relationship looks like through every life circumstance. It has taught me how valuable it is to choose my own support system.
Figuring out what isn’t helpful support has been life-changing. True support doesn’t look like a distant wish of, “Hope you feel better” while remaining at arm’s length. Nor is it an empty offer of “Let me know if you need anything.” Empty words don’t amount to anything when I actually need help.
It also hasn’t helped when others show up in my health situations without having the ability to hold my feelings. Their response to my suffering created this backward need where I had to comfort them. There wasn’t space for me to feel my emotions in the middle of a health crisis, medical trauma, and near-death experience. Instead, I had to put my own experience on a shelf to reassure them that I was OK. I’ve also been made to feel guilty for asking for help or been made to feel that helping me is an inconvenience.
What help looks like for me
I no longer lie about being OK when I’m not. Denying the impact of my health on my well-being left zero room for me to process my feelings about my health, let alone manage anxiety and depression.
But being honest about my lived experience has been radically healing, and doing so has enabled me to identify individuals who are calming to my nervous system, have the capacity to be present in my pain, and who give me support in the way that I receive it. I’ve learned so much about autonomy and choice when it comes to who I allow into these situations with me. It’s been healing to have with me those who can handle hard things and hang out in the messy middle with me.
My support people ask when I’m available, rather than make unannounced visits when I’m in the hospital or sick at home. They don’t pretend that they get it, nor do they minimize how hard it is for me. My health circumstances are met with compassion, validation, and by maintaining a level of normalcy. There isn’t pity or shame; they treat me with dignity.
True offers of help come without strings attached. As someone who has needed a lot of help throughout my life, I can smell it a mile away when the offer comes at a cost. I would much rather do something by myself than have someone hang it over my head that they helped me, feel like I owe them something in return, or worse – feel like it’s a burden.
The story of the good Samaritan is a poignant example of what selfless support looks like. Help comes from the heart, not out of obligation, nor a need for recognition. Ultimately, compassion and care for others makes all the difference.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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