Looks Can Be Deceiving….
Legend: Do You See a Young Woman or an Old Woman?
Cancer Survivors may look good on the outside, but may struggle with multiple unseen functional problems that are highly unique to them.
- Physical. Everyday experiences such as walking, standing, moving, lifting, etc. may become difficult and often aggravating, and relief factors and patterns may differ highly from day to day and person to person. Bowel and bladder functions can experience great fluctuations ranging from urgency to incontinence and thus triggering multiple bathroom visits. Still others may be unable to function without external manipulation and the use of medical equipment such as a catheter and/or lubricant, resulting in a prolonged bathroom visits and the need for discreet disposal of personal items.
- Psychosocial. Some people may experience cognitive issues and find that their patterns of thinking, remembering, and/or concentrating may be somewhat slower than in the past. Emotionally, they may feel as though they are on an emotional rollercoaster. Others may experience the feeling of enormous duress, as medical bills and paperwork may continue to pile up while trying to heal and to manage the daily busy-ness of professional and personal life. Regular and restful sleep may be evasive resulting in being easily overwhelmed and fatigued. Work schedules may need to be adjusted to allow for adequate time to rest, heal, and take care of medical, private and financial concerns.
Cancer survivors often may feel conflicted – they may not want to be perceived as someone needing special considerations because of their situation, nor as one who may be interpreted as abusing the situation. But it is important to embrace and speak up for the things that they as an individual need to survive and thrive during the process. Fear of being misunderstood can lead to a diminishing of their potential to thrive and heal at their own personal best. Feelings like shame and fear further perpetuate the vicious cycle of a growing distance between the survivor and people around them.
Sometimes little things make a big difference. A disabled person parking placard (for which eligibility can be determined via your not-to-be-forgotten primary care provider!) may allow you to preserve independency and energy for other tasks. Communication is essential in any relationship, whether with coworkers, families, or providers. It is up to you to speak up and care for yourself by letting others know what you need. Only through active and engaged dialogue will we begin to understand and support each other.
At work, one may need to submit paperwork to Human Resources Department to justify your need for special circumstances that may help protect your employment. And employment discrimination laws protect cancer survivors. Don’t be afraid to avail yourself of the help the law provides for your circumstances! Vocational Rehabilitation Offices at the State level may be able to provide services to help persons with disabilities prepare for, obtain, or maintain employment. Please ask your care team to speak with a social worker or navigator to help find the services that may be best for you.
Most cancer survivors who need accommodations, do not relish this spotlight and the perceived attention it attracts; but the courage to step up and claim what we need may allow us all to gain insight into how the world can be made into a better place . Inclusion and acceptance – we are all together in this world. We can learn from and support one another. Together we stand strong!