The Sad Truth About the Military and Chronic Illness
I live in a world of hooah, go to, can do and take no prisoners because if there is no pain, there is no gain. I live in the military world. I am currently a military spouse stationed overseas. I am also a veteran, a former army soldier. I grew up in this world. My parents are both retired military. I formally joined this world when I became a soldier and married this world when I married my husband, who has been in 18 years. This world is all I have known, the one I was born into when I was born on an Army post overseas. I was content with this world, understood all the rules and appreciated the black and white of it — that was until I was diagnosed with lupus.
Mind you, it took a few years to discover what was really wrong with me. There were all sorts of diagnoses, hospitalizations, misdiagnoses. This part of my journey is the same as many of us with a chronic disease. During my arduous journey, I came to realize a sad fact of my beloved world: it is a world of suck it up and shut up. Not only do we deal with the crushing symptoms of our illnesses, but then we are forced to deal with a culture of health care that is by its very nature not equipped or trained to evaluate, treat or understand the chronically ill autoimmune patient, and we are suffering for it.
At first I thought I was the only one. I had never heard of anyone else in my community with lupus or even an autoimmune disease. I noticed something right off the bat: my doctors started treating me differently. Even with my labs as proof, the whiplash of my providers’ relationship with me from when I was healthy and in for an occasional flu to baffling symptoms was shocking. I have had my share of eye rolls, to outright long sighs, to “Mrs. Hayden, what do you want me to do?” …um, diagnose me, fix me, be my doctor. Only with positive lab results was I given any sliver of respect in the military doctor’s office. My last internist told me on the side how he could not understand the rise in the diagnosis of “autoimmunes.” He used air quotes and raised eyebrows. He went on to imply it is catch-all diagnosis for the “crazy, lonely, complaining, hypochondriac” military spouses. While there are compassionate, caring providers in the military health care system, it is my experience they are few and far between.
To manage and deal with my illness I started support groups for my fellow spouses. I soon discovered the military program for dealing with illness within their ranks, the much toted EFMP (Exceptional Family Member Program), was a catch-all mainly for family members with school-age children. There is still no support in place for chronically ill spouses. The program will go out of its way to help you conquer and overcome a treatable disease but has no sustainable systems in place for diseases that have no cure. So, in response I started support groups and came to realize my story was not at all unique.
It seems that the first line of treatment with military medicine is not to figure out what is wrong with us but to tell us to eat right, lose some weight and exercise. If our visits and complaints of sheer exhaustion and general malaise continue, step two is to hand out psychotropic drugs. These are to help is “manage our undiagnosed pain.” Rarely is there testing or follow-ups outside of “let me check your thyroid.” (God forbid you have a thyroid overlap.)
The idea of treating someone with a chronic illness sends panic into the hearts of the average military provider. These doctors live in a world of treat and release, and the very idea that this not curable and they cannot med board us out is beyond the scope of their culture. We chronically ill spouses have to fight and argue and fight some more to get someone to listen to us.
Sadly many of us give up. The real hidden truth is that we are bullied into submission. We quietly nod our head and question our symptoms so we will not be a burden. We shut our mouths so our spouses are not in any way adversely affected by our illness. The minute we are diagnosed, a special code goes on our spouse’s record. This limits where our spouses can be assigned. It is another bully tactic wrapped up and presented as a way to help. So, if you have journeyed with your spouse for 18 years, though five wartime deployments, multiple moves, sacrificed so much for his or her professional military career, it can all be undone with one code limiting him or her. In many cases, to save our retirement and our spouse’s career, we struggle in silence. We endure snide looks from active duty staff who behind our backs call us sick call rangers and derogatory names like dependapotamus (it’s a thing, Google it). The fear of reprisal is a very real thing, and sadly there are even graver consequences.
I, through my work with chronically ill spouses, know of instances were so many spouses go untreated. I have a friend who has rheumatoid arthritis. Her hands are so curved, she had problems writing. She no longer knits, crochets or does any other hobby that brings her joy. Simply cooking dinner is a chore, and she lives in constant pain. She chooses not to say anything for all of the reasons listed above but mainly so her husband is not adversely affected. She simply manages in a life of pain. I had another friend with an autoimmune condition who did not manage and passed away hours before an appointment that may have caught her pulmonary embolism. She started feeling a little off on a holiday weekend and wanted to wait for routine care on Monday. Her doctor was not available on a holiday weekend and there was not an ER facility on base. She did not want to be a burden. She died waiting for treatment. Sadly, these antidotes are not uncommon.
My way of coping with my chronic illness has been evolving. At first it was to listen. To gather the wagons. To find others wading thought the weeds. I started online support groups, Facebook groups and where we are stationed, face-to-face support groups. Now I am simply getting angry. Angry that nothing is being done. Angry that our voices are hushed. Angry we are stigmatized. Our very livelihood is threatened if we voice too much concern. We, the spouses, need to band together. We need to do things like change the archaic EFMP program. We need a voice, a loud one. No one is going to speak for us. We need to speak for ourselves and let our issues be known. How come there is no chronic pain plan in the military health care system? Why is there no alternative treatments available for us? Why have we gone so long without a voice?
I know I am an angry voice, but I also know in my heart of hearts that I am not alone. I know I speak for so many of us. These issues are not my issues alone. I want you, my fellow military spouses, to know I hear you, and I am going to use my voice for all of us.
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