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“Living with a chronic illness is hard. Some days, navigating the healthcare system is harder. I am a nurse, looking at healthcare from the other end of the stethoscope. Join me on my journey for answers and a cure – and definitely a few laughs, too!” As a young nurse in 2011, Sarah Beth Cowherd, RN began blogging about her experience in healthcare. She wanted to explore how a new generation of nurses were changing the face of healthcare through the use of technology and social media. Soon…
It is true, the healthy don’t understand what it means to have a chronic illness. I used to get upset when my friends would say, “Hey, I’m coming in to town, want to meet for dinner?” Or, “We aren’t going to be out long, we’ll just be sitting there, you can do that right?” I wasn’t upset in an angry way, I just felt misunderstood and invisible. Dismissed. Isolated. Alone.
You really have no clue what I’m going through, do you?
When I was healthy, I didn’t think twice about how much energy it takes to do the seemingly simple activities of daily life. With autonomic dysfunction, getting out of bed is a task. When I stand, I feel like the floor is pulling me down (as if I could get any lower). I feel the immediate need to lay back down. If I don’t, if I push through and try to walk downstairs, I get short of breath and lightheaded. My blood pressure drops because the nerves that are working to move the blood from my lower body up to the heart aren’t functioning properly. The blood pools in my legs and lower abdomen which reduces the amount of blood that can feed oxygen to the heart and brain. The body tries to make up for this loss of blood volume and tells the heart to beat faster. My heart rate is as high as a healthy person’s when they work out. And that’s just standing.
We reached downtown just as the sun began to set. San Francisco at dusk is a bustling place. Brakes squeaking, fluorescent lights flashing and illuminating windows of bars and restaurants. Rush hour traffic cramps the streets. Street lights begin to light one after the other. You can catch a host of different people walking during this time. A young twenty-something wearing a beanie and a messenger bag, coffee in hand, surely heading to a poetry reading or open mic night. The business savvy woman in heels hustling to the BART station to catch her train home for the night. And, every now and then, you catch three girls on road bikes swerving in and out of stopped traffic trying to get home.
There are obstacles on every side: cable car tracks that line each street attempt to catch your thin wheels, taxi drivers whose patience has run short, and the steep hills that define the city. As the orange light of the setting sun breaks through the crevice between the grey cement sky scrapers, I give up. I get off my bike yelling to my companions, “I don’t have health insurance!” I thought I was cutting it close when we were descending the steep hill into Sausalito past the Golden Gate bridge. The wheels were spinning so fast as we accelerated downhill, it was hard to tell if I was still riding the bike. Or was the bike riding me? One patch of sand or small rock and us beginner bike riders would have met our Maker. After riding the ferry back to the city and attempting to pedal fast to make it home to Nob Hill by dark, I had enough.
The past ten years of my life were studded with risky endeavors: white water rafting on the Nile, bungee jumping over gator infested waters, and getting caught in a rip tide that the next day killed six surfers. Surfing waves (or at least attempting to) that were too big and hiking unknown trails in flip flops and sleeping outside in hammocks and getting lost in strange countries. Anyway, a little road biking in San Francisco seemed tame enough.
But things were different now than in the past. A simple yet substantial difference: health insurance. I was twenty five years old and I needed to be responsible. If my wheel caught in the trolley tracks causing my bike to tip and my leg to scrape against the pavement, I would have to incur the outrageous expense of the emergency room visit and subsequent treatments. Money that I did not have. Needless to say, I jumped off my bike and began pushing it up the sidewalk. My friends were laughing at me as they continued on their bikes all the way home. I didn’t care. I could not risk getting injured knowing that I didn’t have the means to clean up after my mistakes.
Knowing now what I didn’t know then, I would have continued on my bike ride. Knowing that in less than a year I would no longer have the physical ability to ride a bike, I would have finished the journey. I miss the laughter of my friends as we barely escaped hitting a taxi. I miss the burn in my thighs as I pushed up California leaving the Financial District in my dust. More than anything, I miss the freedom I had, freedom from the pressure cooker of health insurance and medical bills. Freedom from the thought that I may never be able to return to the exciting life I once had. I miss the freedom I had before the sickness.
And I miss the bike rides.
Being sick changes you.
For a host of different reasons, I’ve caught myself daydreaming recently–remembering moments in my pre-sick life where I felt normal. My sense of normal was pretty ridiculous. I used to travel a lot.
I’ve been white water rafting on the Nile River in Uganda.
I went “surfing” off the Pacific coast of rural Nicaragua.
Spent the night in the executive lounge in the Amsterdam airport.
Strolled the tea fields outside Nairobi, Kenya.
Went deep sea fishing in Aruba.
Napa Valley. Sedona. Chicago.
Karolyn Gehrig has an invisible illness, but #HospitalGlam makes her feel less invisible. Her recent feature on Huffington Post says she was diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder in 2003 and has since had many hospital visits, doctor appointments, and various medical testing–something those of us with chronic illness are very familiar with.
Others with chronic illnesses have joined in on Twitter– sharing their own #HospitalGlam experiences.
I will have to be more intentional on taking glam photos at the hospital. I’ll submit my first now:
As the New Year is upon us, I can’t help but think about resolutions, goals, the future–and what that will look like. For the chronically ill, the future doesn’t necessarily seem so bright. The New Year may not always seem so hopeful.
Recently, it was New Year’s Day. I saw a ton of New Year’s Resolutions on Facebook that were simple, yet flawed in my opinion. “I hope you have a happy and healthy year.” “This year, I will live a healthier lifestyle.”
I’m also at that time in life where a lot of my friends are having babies. And so many times I hear, “I just want them to be happy and healthy.”
These statements have huge implications for those who are sick. If being “happy and healthy” is all you want for your children, what happens when they get sick? If what is important this year is that we get healthier, what happens when you get sicker?
Health can’t be our end goal because for some, that may never come.
We need a better resolution because this could be the year you get cancer. It could be the year you injure your back. It could be the year you find yourself like me, not a practitioner, but a patient.
And I don’t say that lightly. I know it sounds depressing, and gloomy, and not ‘glass half full’ thinking. And it may be, but it is realistic. It is the truth. We don’t know what is coming, and if health is our resolution, if health is all we want for our children, for our future, what are we left with when affliction comes?
Rather than resolving to be healthy, I resolve to:
So this year, instead of seeking health above all else, may we resolve to be better people, better mothers, friends, children, spouses. May we seek to be stronger willed, better minded, more faithful.
Let us strive, not for health, but for wholeness.
I wanted to give you a road map: How to get through the Holidays when you have a chronic, sometimes invisible, illness.
I started with good intentions, but I’m finding it difficult to find the words. I’m finding it difficult to come up with tangible things we can do to help us survive the Holidays while living with invisible illness. A check list of sorts.
The truth is: It is difficult this time of year when you are sick. The year is coming to a close, and as we think back over the year that has passed, we often times are left wanting. Thinking about what could have been if we felt better. Wishing we could have accomplished more. Wishing for health in the year to come. Wishing to experience the magic of the season as we have in years past.