Friday, February 5, 2016

The Forgotten Organ?

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Individuals who battle multiple chronic diseases are more than familiar with having to juggle symptoms that fall on various parts of the body and points on the health continuum. There might be a central disorder with the spine, but that can affect the lungs since the rib cage is connected to the spine, the head with spinal headaches, the heart with decreased flexibility, the stomach and intestines with increased inflammatory diseases, etc. So, we've covered the spine, the heart, the lungs, the stomach, the intestines, but if you notice, we have missed one key ingredient here. The brain.

When treating and managing chronic diseases, physicians and the overall care team are typically stellar at understanding the physical symptoms associated with the disease; however, there remains a large hole in care and whole body health management. What about our mental health? I asked fellow chronic disease fighters what they believed there care team does well, or what their team misses, when it comes to their mental health.

One thing that I have noted over the last 10 years with Crohn's Disease is that although there are treatment methods, like Remicade, doctor's don't always take the whole picture into account. I also have problems with my back, my skin, and my hip joints. It's wonderful that these things can be treated, more or less individually, but I've really had to take it on myself to try and think more holistically. It seems so obvious to me that all of these issues are connected, but sometimes that isn't the way it's perceived. ---Rori Leigh Meyer

I can go on for ages on this, but here's a real life illustration of the problem: I have a handful of people I see, but the two I see most frequently are a rheumatologist and a psychiatrist. Rheumatologist: asks nothing about my mental health, other than checking medications and possible interactions. Psychiatrist: asks about physical health, physical symptoms that could be related to mental illness, and vice versa. We talk a lot about stress. I only have that "luxury" having been diagnosed with mental illness prior to "physical" illness. For those who may just be struggling or in need of emotional support, stress management, but not with a clearly evident mental illness, in the current environment it's a crapshoot. ---Cyrena Gawuga

Being newly diagnosed with a chronic disease I feel that the doctor doesn't always listen when I tell him how I'm feeling and what's bothering me. It gets brushed off sometimes as oh it could be something else. It's not related to your illness blah blah blah. But in turn this hurts my mental health and becomes frustrating and you feel alone. Like a liar sometimes. And I feel mental health at least for me magnifies other symptoms and or the underlying issue itself which makes mental health and physical health worse. I have not been diagnosed with any mental health issues but I have felt at times my mental health is poor. ---Chris Bronner

Very little focus on it in world of diabetes/celiac; oddly enough, endocrinologist failed to see vitamin D deficiency=depression for me. ---Brianna Wolin

Cyrena, above, brought up another key point: mental illnesses are also chronic illnesses. When I say that I myself suffer from 7 different chronic diseases, I include Depression and Anxiety in that list. This may not be the case for everyone, but for me my mental health and my physical health play a cyclical role with each other. They play off one another: when my depression is bad, my physical health gets worse, and when my physical health is bad, my depression gets worse. Additionally, when both of those issues occur, my anxiety increases. Mental illness is only addressed when I'm seeing a psychologist. I can probably count on one hand how many times my other physicians have inquired about my mental health. I have even had many "cry for help" moments, blunt emails saying that I was really struggling, but it was met with a nonchalance as "part of the deal" of my disease.

In fact, many pieces of literature link the occurrence of chronic pain and mental health, specifically depression. From WebMD:
-According to the American Pain Foundation, about 32 million people in the U.S. report have had pain lasting longer than one year.
-From one-quarter to more than half of the population that complains of pain to their doctors are depressed.
-On average, 65% of depressed people also complain of pain.
-People whose pain limits their independence are especially likely to get depressed.

How do we start talking about mental health in the same breath as diabetes, or arthritis, or other diseases? I encourage everyone to share their story. It's tough to be open, and transparent, but I remind myself of this: if one person can feel less alone, if one person can feel empowered, then my daily struggle is validated, and maybe even diminished just that much.

Share your story. Be a voice. Our voices are what will make change in the system. 

About the author: 
Kristin Coppens is a social media and digital communications professional, a health activist, an ePatient, and a multiple chronic diseases fighter and blogger. You can read more about her chronic illness journey on her blog, Chronically Kristin, or follow her on Twitter.
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. ePharma will take place February 29 - March 2, 2016 in New York City. As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!

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