Both Sides of the Bedrails

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    Although my bedside shifts have significantly decreased in recent years due to chronic illness, I still work an occasional weekend shift at an infusion clinic for chronically ill kids. Many are here on their day off from school, receiving therapies to treat their hematologic disease, arthritis, crohn's or even an immunodeficiency. While pediatric oncology has been a staple of my career, I’ve always felt a deep connection to these chronically ill patients, having been there myself.

    Both Sides of the Bedrails

    Hearing the struggles these young patients sometimes face with school, bullying, relationships and their health can be heartbreaking. What they don’t know is that the nurse they have today, has been there too. There are many issues a chronically ill teen faces that go far beyond surviving high school. Being aware of these difficulties as healthcare providers can allow us to provide vital services and support to these complex patients.

    Being Absent

    Missing weeks, even months of school - I’ve been there. Feeling the pressure of impending adulthood. “What will I become?” can turn into “What can I become?”, depending on possible limitations. College searches become riddled with extra questions. Is it too far? How can we coordinate infusion schedules with class schedules? Is there a nearby pharmacy? What’s the on-campus healthcare like? While all of this seems overwhelming for both the family and the patient, it is possible and many resources exist to help chronically ill students once enrolled. It’s important to educate these families on seeking out ways to make the transition easier for all involved, leading to the best chance for success.

    Loss of friends

    Gaining and losing connections throughout high school is part of a normal growth process. However, this can be a real source of sadness for many ill teens, as loss of friendships due to illness is usually beyond their control. Not having hit full emotional maturity, some friends may act out, tease or ostracize our teenage patients. I know because it happened to me. After being out of school for three months for the second time, even my best childhood friend (who lived next door for ten years) stopped coming around. There were too many questions at school. People thought I was ‘weird’, rumors flew as to the cause of my absence. Once returning back to school my ‘friends’ no longer wanted to associate - leading to further feelings of isolation and realizing just how different I was from others my age. Putting teenage patients in contact with social work or psychiatric services early can serve as beneficial a place for them to vent their frustrations, losses and hopes for the future. Support groups can also be a place of discovery among others in their age group, realizing they are not alone in their struggles.

    Balancing Act

    I certainly can’t say having a chronic illness ever gets any easier, but working on coping mechanisms and identifying resources early can help these teens immensely down the road. Having a strong support network and a team of compassionate healthcare professionals is crucial for those with a chronic illness at any age. I’m aware of how much our care really means to these young patients, potentially even shaping their view of what a career in healthcare could be like. I see them working on homework or college applications while I monitor their vital signs and premedicate them. And I get it - I was you; receiving IVIG for years in a peds hem/onc clinic just like this one, trying to navigate my future too. And yes, I know how much that book of DVD’s or that extra warm blanket during a long infusion can make all the difference.

    After I leave my bedside role, I too, try my best to balance it all. Taking my oral methotrexate mid shift, arriving home after a long day in a case management role to receive a subQ injection from my loving husband (I still enjoy a good pediatric bandaid - the plain ones are just so unsatisfying), scheduling our weekend plans around my immune globulin infusions, careful to not commit to social plans during flare ups, making sure all meds are refilled and delivered on time. It can be exhausting and can require as much attention as a full time job.

    Nothing about being in healthcare or having a chronic illness is glamourous, but it is beautiful, struggles and all. Both have shaped me as a person and taught me invaluable lessons about the fragility of life, the strength of the mind, and the resilience of the human spirit.
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  2. Visit Ashley Hay, BSN, RN profile page

    About Ashley Hay, BSN, RN

    Freelance healthcare writer and owner of AHayWriting.com with over a decade of nursing experience in several areas of pediatric & adult oncology.

    Ashley Hay, BSN, RN has '10' year(s) of experience and specializes in 'Oncology'. Joined Aug '16; Posts: 69; Likes: 227.

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    9 Comments

  3. by   spotangel
    Wow! Ashley! God bless you for using your pain and experience to help others!
  4. by   Medic/Nurse
    You ARE so GLAMOUROUS!! Geez, girl! You are amazing. That is all.

    Glamourous & Amazing! Write that down!!!!



    I know you were not given a choice — chronic illness (or injury) is a tough hand — you deal and get up and go on for good as best you can or just give in and let it just consume everything. Sadly a minority of patients may not have many choices, I'm glad you made the best of the bad.

    You are are hero and and inspiration. You should spread the word of what it POSSIBLE and attitude can change everything.

  5. by   Ashley Hay, BSN, RN
    Quote from spotangel
    Wow! Ashley! God bless you for using your pain and experience to help others!
    You're awesome. Thanks for reading <3
  6. by   Ashley Hay, BSN, RN
    Quote from Medic/Nurse
    You ARE so GLAMOUROUS!! Geez, girl! You are amazing. That is all.

    Glamourous & Amazing! Write that down!!!!



    I know you were not given a choice — chronic illness (or injury) is a tough hand — you deal and get up and go on for good as best you can or just give in and let it just consume everything. Sadly a minority of patients may not have many choices, I'm glad you made the best of the bad.

    You are are hero and and inspiration. You should spread the word of what it POSSIBLE and attitude can change everything.

    Wow, thank you for all your kind words of support. It truly means so much. Needed that today. Thank you!
  7. by   tnbutterfly
    Great article. Thanks for sharing your story. May others receive encouragement by reading this.
  8. by   Ashley Hay, BSN, RN
    Quote from tnbutterfly
    Great article. Thanks for sharing your story. May others receive encouragement by reading this.
    Thank you for believing in my writing ability from the start and providing a wonderful online community to share my story!
  9. by   Donna Maheady
    Ashley,

    Thanks for sharing so much of ourself with us! Your story is music to my ears. Nurses with disabilities and chronic illness have so much to give to patient care.

    Some lessons "from being there"...just can't be taught.

    Be well!
  10. by   Akay1717
    You write beautifully. Thank you so much for being open and vulnerable and for sharing your experience. Nursing is a beautiful mess and I'm so glad nurses like you are a part of it.
  11. by   Ashley Hay, BSN, RN
    Quote from Akay1717
    You write beautifully. Thank you so much for being open and vulnerable and for sharing your experience. Nursing is a beautiful mess and I'm so glad nurses like you are a part of it.
    Thank you for reading! Your comments are so appreciated <3

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