The Patient’s Perspective

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dawn mancusoA wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses. – Hippocrates

I’ve recently had some unexpected health issues that have given me some time to pause and see life from a different perspective. I don’t share this to scare anyone – I am doing fine and mending very well. I share it because I’ve gained insights as a result of this experience that I do want to share with you.

Life as a “patient” is like living on a different planet. At least, that was my initial perception of it.
I have always been someone who has been very healthy, rarely getting even a cold, and when something untoward did come up, I have always bounced back more rapidly than expected, so that it became a temporary “blip” that was quickly forgotten. This was the first time I have had to face something more serious – including my first surgery. Out the window goes the “to do” list of everything that was once so important, and the schedule gets replaced with “must do’s” defined by doctors, hospitals, nurses, testing facilities, etc. With that came all of the emotions I am sure everyone in the hydrocephalus community knows too well – the fear of the possible pain, the panic at the loss of control, the worry about the outcome. Moreover, you sometimes don’t know what to feel because you are so conflicted – you are thankful for the caring, skillful doctors working with you, but get frustrated by their demands, their inflexible schedules, their less-than-perfect bedside manners. Or, you get annoyed by the mind-boggling paperwork associated with insurance coverage, logistical challenges of getting test results distributed to all the right places, and even the simplest tasks like finding a parking space at an overcrowded, inner-city medical facility. You don’t want to be defined by your condition, but you wish others could understand what you are going through. You are thankful for the many family members and friends who jump to help you but feel guilty that you are uprooting and rearranging their lives to deal with your challenges. Still, you keep a positive attitude, knowing that it helps to speed recovery and make the experience more bearable.

Then, out of the blue, you make a connection with another patient – someone who has gone or is going through what you have. They listen. They share. They don’t judge. They make recommendations based on their experiences. They give you hints about what you can do to lessen the possibility of side effects or negative outcomes. They rejoice with you when things go well. You really don’t have to say much; they just know.

There is such strength in those connections. At its essence, this is the beauty and power of patient advocacy organizations – like HA. I thought I understood that before. After all, I have been a caregiver for family members who have faced illnesses, and I gained much from the information and education available through organizations similar to HA. However, it wasn’t until the past couple of weeks that I can say I truly appreciate the service, the support that organizations like HA provide. On behalf of patients everywhere, I want to send a great big “Thank You” to all those patient volunteers – official and unofficial – who make it their business to help the newbies adjust to their new reality. This includes all those in leadership roles (such as Support Group chairs and WALK chairs) as well as those who share one-on-one or via social media (such as Facebook). Rest assured, your work impacts many.

Maybe the planet isn’t so different after all. Maybe it is me who is different. And, thankful I am for that!

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