In our third post in our patient vignette series Ken brings us into his role of caregiver for his wife who has been diagnosed with Crohns disease. Often we focus on trying to understand the hurdles faced by patients and overlook the fact that their caregivers face them, too. Ken illustrates how everything can fall apart when the caregiver becomes sick.

You can follow Ken on Twitter @dontpunishpain, visit his blog at Don’t Punish Pain, and check out his YouTube Channel.

Ken’s Story: When the Caregiver Becomes Sick

My wife has Crohn’s disease. As such, I have become an advocate for all those living with chronic illnesses, creating a series of videos called “Feel This Pain” to educate the public about how various kinds of chronic pain feel. I’ve become a member of many online support and informational groups, and was recently asked to write this article about what a caregiver goes through. What is life like for the people who care for someone with a chronic illness? I had no idea what to write about; very broad topics such as this are difficult. Too many directions you can wander off in.

Then I got a cold that lasted seven days, compounded by an infection that caused inflammation in both my ears. Suddenly, I knew what I would write about.

For me, being sick means I can’t fully be there for my wife on her bad days. She is completely self sufficient, but there are times when her Crohn’s flare causes inflammation in her joints that is bad enough she cannot get out of bed or off the couch without assistance. For someone with Crohn’s, who spends a significant amount of time in the bathroom, this limited mobility is more than just a mild inconvenience. Other days, her flare might consist of a combination of the painful joint inflammation coupled with the feeling of her guts being forcibly removed through her rectum by way of being attached to a 10-pound lead pinecone. On those days, I feel it’s my job to be there by her side and help her as much as I can. If I’m sick, my ability to do that is significantly impacted.

I have a day job, and they are (after a year of working there) fairly supportive of me taking time off for my wife’s various doctor appointments, and of me staying home with her on days when her pain is particularly bad (i.e. she needs my help to get out of bed). This supportive attitude is not, as I discovered at previous jobs, in any way normal. In my experience most employers don’t understand and don’t really care that a person who has a chronically ill spouse has demands on their time that are not optional. They have a responsibility to that ill spouse/partner that is very different when compared to a relationship where both people are healthy.

For example: my wife has Crohn’s, a disease where your own body causes inflammation and ulcerations throughout the GI tract/bowels. It’s a very painful disease that has no cure, and more often than not those who suffer from it find their good days (aka “low pain days”) to be few and far between. Many of the available treatment options for a Crohn’s patient involve taking medications that have the effect of suppressing the immune system, making you much more susceptible to catching…well, anything. A person whose immune system is suppressed who then gets a cold or the flu will have symptoms that are much worse than normal, and it will take them much longer to recover.

So for me, as my wife’s husband and caregiver, if I get sick I have to take whatever steps necessary to get well as soon as possible. What might be a common cold to most people can affect her like a severe case of the flu. Taking it a step further, a severe flu could land her in the hospital. I don’t like hospitals, and I certainly don’t like having to see my wife in one.  When I get sick, I have to stay home and get well. The quicker I beat the sickness, the less chance I have of passing it along to my immunocompromised spouse.

The idea of staying home when you are sick until you get better is, of course, anathema to the modern workplace. That type of thinking flies in the face of everything 21st-century companies demand of their employees. We are encouraged to be martyrs for the cause and are expected to come to work when sick, even though logic would suggest that getting all of your co-workers sick is counter-productive to the financial bottom-line. According to an article from September 26th of this year by Debra L. Ness, President, National Partnership for Women & Families:

“Of workers who are paid $11.00 per hour or less, just five percent have paid family leave to care for a seriously ill loved one or new child, 16 percent have access to employer-provided short-term disability insurance for their own serious medical needs, and just 30 percent can earn paid sick days to recover from common illnesses.”

Anecdotal evidence suggests that those companies that do offer paid sick-leave go out of their way to discourage employees from using it.  This is why you are now seeing cities enacting mandatory minimum paid sick-leave standards, from New York, to Washington D.C. to Portland, Oregon. Just this year California passed the “Healthy Workplaces, Healthy Families Act of 2014” which ensures that employers of all sizes provide at least three days paid sick leave annually to employees who work 30 or more days a year. Laws are being passed because time and again, companies have shown that they cannot be counted on to do the right thing on their own.

Right now, I’m in a good position with an empathetic company. Millions of people are not so fortunate. Much more work needs to be done. We need stricter laws on the books that protect both the chronically ill and their caregivers. Just as important, we need to reeducate our society on who the chronically ill are.  We must eradicate the image the public has of the chronically ill being drug-seeking opportunists, and replace it with the truth; the chronically ill are simply people, in more pain than most of us will (hopefully) ever experience. What they need is validation that their pain is real, and empathy for what they endure every day of their lives. It is time for a change. It is time to get back to compassion without conditions.

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Statement of Debra L. Ness, President, National Partnership for Women & Families
http://www.nationalpartnership.org/news-room/press-releases/as-new-bureau-of-labor-statistics-data-reveal-that-most-employers-still-do-not-provide-paid-leave.html

California passes law to require paid sick leave as legislation lingers in DC
http://www.pbs.org/newshour/rundown/california-paid-sick-leave-law/

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Thank you, Ken, for sharing your story with us! You are doing your part to bridge the gap between those in healthcare and the patients –and caregivers– they serve.

Do you have your own inspiring message to share? Please visit Share Your Story and tell us about it. We’d love to hear from you!

For more installments in our #PatientLens series click here.