In the midst of developing my organoids and helping patients navigate their own cure, I had unexpectedly become a cure guide for my brother’s brain cancer. This was devastating for me and most importantly my mother as I can barely fathom the turmoil she’s going through as a mother of four, low-income, and a non-native english speaker. As someone who is both a patient with a rare disease and a cure guide for others, I started reflecting on the common challenges patient’s with rare disease face and made a to-do list for those who are figuring out how to navigate this as well.
The challenges we face
Lack of diagnosis/prognosis. There are a few layers of unknown that patient and their caregivers have to navigate. There is still so much we don’t know in medicine and science. As a scientist we may have a therapy that shows some promise but there are gaps in whether it works in patients. Families believe medical professionals know the answer on how to fix or manage the patients condition, let alone sometimes they expect doctors to know the diagnosis. However, the truth is these answers are still educated guesses and very few tests exist out there that can give definitive answers.
Lack of time. These unknown still falls onto caregivers who carry that burden of not knowing, waiting for answers, waiting to talk to medical professionals all the while society forces us all to continue to work and pay the bills with barely 2 weeks alloted grievances/bereavement leave. Even if we don’t have the answers, it’s the timeframe of the unsuspected, abrupt notice of medical procedures, updates, and transfers that interferes with the day-to-day and not to mention the emotional turmoil of fighting and begging work to allow us to take that time to adjust.
Lack of medical jargon. This is the another language barrier that caregivers face as most of us barely have biology background let alone the medical understanding of what's happening to the patient. But they are tasked with the responsibilty of navigating and understanding the gravity of these decisions they both have to make.
Lack of financial support. Things until a patient and their caregivers having to navigate this. Having to navigate the medical system to get answers, the financial burden, and family dynamics while not having the knowledge or vernacular to speak to it let alone the emotional trauma you’re dealing within yourself. I had to chase down social workers to find local financial support and resources to help pay for something as simple as parking for my mother who came in everyday.
Lack of emotional support. These seems like the last thing to provide but it should be one of the first and a calm demmeanor can go a long way in the medical profession. This can also be provided through social workers who are trained to provide local resources to mental health professionals as well. Persistent stress is emminent in medical cases that take a long time. The marathon of chasing doctors, nurses, social workers, and case managers takes a lot of time and a toll on your mental health. Burnout becomes common and the guilt of not being able to provide emotional support for the patient is eating away your hopes and strength.
Teetering between grief and hope. There are days when you look at your child or family members suffer and grief seems to swallow you into this dark, infinite space of sadness and emptiness. You lose sense of time and relevance of the world around you and you can barely “function” as a adult let alone a normal human being. In those times of grief, sometimes doing the motion of making breakfast or walking around seems like an empty meaningless thing your body does without intention. Those are the days when you need to establish a process to help ground your mind to your body. I find swimming is my grounding where I can do something aimlessly but it helps my mind remember that I still need to keep this body alive and healthy and are limited by the air you breath. That grounding will help me snap back into my body and engage with my bodily needs again. Grieving the grief helps make space for joy, happiness, and hope. It’s part of the everyday process and if it gets trapped and not expressed, grief becomes depression and potentially prolonging your ability to support yourself and others who need you.
What to do in the hospital
Nurses are amazing human beings. They take care of the patient and most of them are in the dark of the next steps. So please be kind to them. Offer them meals as they are taking 12 hour shifts to ensure the best care while you're not around.
Doctors are the gate keepers to diagnosis and prognosis. They are the ones who interpret the data and help provide options for the patient. It's important to know which type of doctor to talk to since each doctor can only chime in on their speciality. Have the nurse help you get the attention of your specific medical doctor to talk about the diagnosis, prognosis, and treatment options.
Case managers help you figure out insurances and get the needs/care the patient needs. Make sure you have an assigned case manager. They are typically nurses who know about the medical condition and can help navigate your insurance and what services are covered and local clinics and facilities that will help the patient.
Social workers will connect you to financial resources that the hospital or clinic provides. They should connect you to local disability resources provided the local, state, or federal government. Ask for long-term parking permits and vouchers to subsidize your hospital stay. You might consider searching for financial support for the patient and potentially enroll them into unemployment and/or disability insurance.
Don’t forget to find mental health providers that can assist you as the caregiver. In the end, you are a project manager for the patient and helping the navigate this while they can’t is helpful.
Occupational, speech, and physical therapist are good people to meet. This means the person you’re caring for are on the mends. Occupational therapy and speech therapist help the patient learn how to do functional things like stand up and learn how to walk while speech can help with things from speech to swallowing.
Who is the beneficiary? The beneficiary takes care of and/or manages the patient’s assets. Make sure to follow-up with bank accounts and credit cards.
My brother is going through his 2nd resection today, so I hope I can provide an update on the to-do list on how to navigate medical care outside of the hospital. For now, we continue to provide space to grieve and clearance for hope.
Love Light
