Even without a degree, I’ll keep finding a new path for faith and advocacy
I set aside a longtime educational dream when the costs put it out of reach
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I have been applying to graduate programs that would incorporate more spirituality into my advocacy work with the hemophilia community and allow me to explore how faith and spirituality help people cope with bleeding disorders.
Among them was a dream doctoral program for working professionals that offered students scholarships of between 30% and 100% of tuition costs. Hopeful that everything would work out when I received their response, I opened the email with anticipation.
As I read it, my heart sank. I had been accepted, but was offered a scholarship of only 25% of the tuition. Instead of celebrating my acceptance, I fought back tears. In order to attend, I’d have to take out more than $40,000 in loans. I knew I couldn’t in good conscience go into that much debt for a degree that would greatly enhance my work but not my earning potential.
When I found the program, I was naively hopeful I would qualify for enough aid that I could pay the remainder of the tuition. I took on additional consultant work and started saving, but it wasn’t enough (not even close). It’s a huge disappointment, but I’ll be OK. The institution didn’t do anything wrong, nor did I, other than overestimate the chances of my dream becoming a reality.
Sacrifices made
Having hemophilia means making sacrifices. The rising cost of medications, copays, and insurance premiums makes taking on debt scary, but to go without insurance is terrifying to consider. I recently figured out that it would cost me almost $25,000 a year to ensure I’d have access to my hemophilia medications if I had to obtain insurance on the marketplace in California. I would struggle to meet my bills if I had to pay for such a large portion of my medical insurance. Yet I need insurance coverage to live. It’s not a luxury; it is a daily necessity.
I am not alone. Here in the hemophilia community, I hear of people going without medication because they can’t afford access. I’ve seen families affected by hemophilia who sacrifice their dreams to be fiscally responsible. I’ve watched friends agonize as they fight to obtain approvals for access to life-saving medication, even when they have insurance. It seems so unfair. No one asks to be sick or born with a rare disease, and the burden patients carry is already so heavy.
Our community isn’t alone. Those who need insurance the most in the U.S. often lack the resources to obtain it. I can’t wrap my head around this inequity.
Faith, hope, and perseverance
Constantly focusing on the larger picture can be exhausting, but living with hemophilia means not losing sight of my short- and long-term goals and responsibilities. While education is critical for many professions and something I highly recommend, one more degree that accumulates significant debt without raising my salary seems frivolous and irresponsible, especially given how much insurance costs are rising and how many uncertainties exist about future care.
It’s hard to let a decades-old dream pass me by, but it may be the right decision.
While the doctoral program I wanted to get into may have offered me a foundation and access to experts, it doesn’t mean I can’t find that knowledge in other spaces and weave it into my work. I’m still waiting to hear from several master’s programs and have a promising possibility, but if I can’t obtain the education I want in a way that’s economically responsible, I can learn without a degree. I can read, listen, and be a supportive and encouraging witness to the experiences of my peers.
I know I am in good company. Our community makes these hard choices frequently, and we do what we have to do because we have no choice. We make it work. We persevere, believe, and hope.
Note: Hemophilia 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 consult your physician or another qualified healthcare 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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