What It Means to Be ‘Just the Sister’
Photo by Shelby Dell
In many ways, I feel unqualified to write for a publication about cystic fibrosis. I was lucky enough to be born only as a CF carrier, while my younger brother, Brad, drew the short straw in the Punnett square game. Besides, my day-to-day life is no longer affected by CF considering that Brad, healthy and transplanted, lives in Hawaiʻi, and I’m half the country away in Colorado.
I feel unqualified, but then I remember growing up as a sibling to someone with CF and how alone I felt. I didn’t fit in anywhere. Brad had the disease, the attention it brought, his doctors to explain his illness to him, and all the blogs and articles to read about other people like him. My parents had support groups and other parents online, and the doctors to talk to. I was just the sister, if I got any recognition at all.
I look back at my childhood and teenage years and wonder if I could have had a better relationship with myself and my family if I just had someone to relate to as a kid. I hope that I can be that someone to other siblings of people with CF.
A major issue I plan to address in this column is the mental health of siblings of people with chronic illness. There is some research that seems to be profound to people who haven’t had the sibling experience, but I suspect that we can all relate to the results on a deeply personal level.
Anxiety, unhealthy relationships, depression, guilt, jealousy — these were all things I accepted as a normal human experience while growing up, until college, when I realized I could actually get help for them. It’s only very recently that I’ve realized how much of it is tied up in growing up as a caregiver. My hope is that we can unpack some of that together here, and that parents and CFers will check in on the siblings.
I would never say that my parents were neglectful, or even that they didn’t realize the strain that our situation put on me — they were the best parents I could have asked for. It’s simply that a part of being a sibling of someone with chronic illness can be that we downplay what we are feeling because we don’t want the added burden of our mental health to be put on our parents.
I encourage siblings to be vocal about those feelings. We deserve the therapy, care, and mental health that anyone else does, even if it’s not putting us in the hospital or threatening our lives. Furthermore, I feel I would have been a much better caregiver if I had simply taken care of myself first.
To end my first column, I wanted to share a verse of the song I borrowed my column’s name from, “Guernica,” by Brand New. This song has made me feel seen since high school. Though it’s not about cystic fibrosis specifically, it certainly embodies how I have felt as a caregiver growing up.
“I’m not letting you check out
You will beat this starting now
And you will always be around
I’m there to monitor your breathing
I will watch you while you’re sleeping
I will keep you safe and sound.”
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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.
Donna
Great job Shelby!!!
I know Sophia could relate to this as well.
Thanks for taking the time to help others.
You are such a kind hearted, loving person 🙏🏻❤️👏
Diane Bell
I was “just the sister” in the 50s when there were no support groups for parents, let alone siblings.
I went through the guilt, also.
As it was back then, my brother did not survive past 5 1/2 years old. I was 5 years older than he, so in my mind, I felt as if I had to be both daughter and son for my parents. Of course, they never knew why I went to lumber yards with my dad or tried to pound nails along side him.
My mom never fully recovered from the death of my brother...a grief that I had no clue about.
Unfortunately, my mom died 5 years before my child was born. Thankfully, my child was born perfectly healthy.
Yes, I know well the “only the sister” life.
Please be gentle with yourself, you were not only the sister, but you were the BEST sister.
Rachel Williams
Wonderful article Shelby. I am in my late 40s with CF. There was certainly little or no recognition os siblings in the 70's 80s - my sibling was expected just to be good - and to feel lucky it wasn't them if there might have been any complaining. It has not been good for their mental health and relationships. Parental and teacher responses to 'naughtiness' was validating and eventually, alcohol helped to anaesthetise the anger and shame - but only invited more. Not great. And hopefully not typical. It is different now, but still more needs to be offered to sibs. Your article is so important and so welcome. Thank you so much for it. I hope you are doing well.
julia greenwald
Thank you for this article. I have been a social worker in a CF Center for the past 32 years - and was a sister to a sister who suffered from a rare and complex genetic disorder for 50 years until she died this past year. Because of my personal experience, I ask every family I meet about the patient's siblings. I offer to meet with them if they are interested, and I share my feelings that being " just the sister" also comes with positive aspects, for instance, I feel that I live with a greater level of gratitude for every good day, and I offer greater respect to the parents of my patients because I know how challenging it is to live every day with the challenges of an ill child. Keep writing!! What you have to say is truly important.