Dealing with a Health Condition or Disability that Others Can’t See

Unseen disabilitiesSome disabilities are visible, and others are not. They each have their own challenges. I can’t personally speak about what it’s like to have a disability that is obvious to others. If someone who has experience with that would like to write a guest post for this blog about their experiences, please contact me.

My disability is chronic and debilitating, but it is not visible. When it is flaring up, people sometimes notice symptoms. But most of the time, it is not obvious. While that means I don’t always have to deal with other people’s biases or awkwardness, it also means that other people typically don’t understand or respect my limitations.

It can be difficult for others to accept or remember your restrictions when “you don’t look sick” – especially if they have never personally experienced a chronic illness or disability. They may become offended when you cancel plans you had made with them, or don’t keep in touch as often as you used to. Or, because they don’t understand your limitations, they may try to convince you to do things you know would be detrimental to your health.  They may even imply that you are lazy or “faking.”

Before my condition became debilitating, I didn’t understand when someone with a chronic health condition told me that sometimes it was just too exhausting to go to church because so many well-meaning people would come up and ask how they were doing. I didn’t understand when I read on a blog that a person with a chronic health condition had gotten divorced because they just didn’t have the energy to cope with their health *and* try to sustain a relationship. Now I understand.

If you have an unseen illness or disability, and you have people in your life that you would like to have a better understanding of your reality, I highly recommend this post by Christine Miserandino.  (You can also download it from that website as a pdf.) It’s called The Spoon Theory, and it’s the best explanation I’ve seen of what it’s like to live with a chronic, debilitating condition.  Even if they still don’t really get what it’s like to be you after reading the article, at least it will give you a common vocabulary to explain things to them.  I find it very helpful to be able to say, “I don’t have enough spoons for that,” or “If I do this with you, it will take all of my spoons, or nearly all of my spoons, and then I won’t be able to do x, y, or z.  Is that how you would like me to spend my spoons today/ this week?”  It helps make my reality a little more tangible for others.

P.S. – If you’re wondering what the people at church “should” have said to the person with the health condition – if you’re wondering what the “right” thing is to say to someone you know is coping with an illness or disability – I recommend “It’s nice/good to see you.”  It acknowledges that you noticed I haven’t been around, and you noticed I am here today, but it doesn’t require me to spend my limited energy talking about my health.  If I’m feeling well enough to be here today, I probably don’t want to be reminded that I frequently *don’t* feel well enough to attend, and I don’t want to feel defensive about my limitations.  Just say “hi” – it’s enough.

Proposed Health Care Hikes in Pentagon’s 2017 Budget Proposal

Another good reason to embrace preventive health and self-care: retiree health care benefits continue to erode.  Recent proposals would make health care significantly more expensive for retirees and their families.

According to this article in Military Times, the Pentagon’s proposed 2017 budget includes several changes to the existing Tricare system and to the fee structure.  The most significant price change is the proposed implementation of an annual healthcare fee for “working-age retirees” – retirees (and family members) who are not yet eligible for Medicare.

Under the proposed plan, Tricare would be re-structured into two choices: Tricare Select, which provides care through military treatment facilities (MTFs) and is similar to the current Tricare Prime option, and Tricare Choice, which provides care through civilian providers and is a hybrid of the current Tricare Extra and Tricare Standard options.  Tricare Select would cost $350 for an individual or $700 for a family (per year).  Tricare Choice would cost $450 for an individual or $900 for a family (per year).  Please see the Military Times article for proposed co-payment rates and other proposed fees, which would be in addition to the annual enrollment fee.  What’s the bottom line?  According to MOAA’s president, retired Air Force Lt. Gen. Dana Atkins, “the full array of fee changes would mean about a $500 to $600 annual increase for retired families under 65 who use in-network providers and an increase of more than $1,000 a year for those using out-of-network providers” (MOAA article on the proposed changes here).

The proposed budget also includes increases to the catastrophic caps for beneficiaries.  For retirees, the cap would increase from $3,000 to $4,000, and participation fees would not count toward the caps.

Military Times states, “According to budget documents, the changes are designed to entice more beneficiaries to use military hospitals and clinics by continuing to offer care at these facilities at no cost to patients and curb the rising costs to DoD of private care.”  As has previously been pointed out on this blog, this places patients in a very difficult position when MTFs in their area are at capacity and not accepting new patients.

Furthermore, MOAA is concerned about the robustness of the non-military network of providers.  In the MOAA article, Lt. Gen. Atkins asserts, “One of the main access problems is that many doctors don’t want to be in the current network.  We’d like some assurance that will be fixed.”

The new system would require annual enrollment, and families who fail to enroll and pay the enrollment fee will forfeit coverage for the plan year – in other words, coverage would no longer be automatic, and if you don’t sign-up during the enrollment period, or fail to pay the fee, you would have no military healthcare for that year.  While it is suggested that requiring annual enrollment would bring Tricare in line with civilian heath plans, one wonders about ulterior motives.  Research has repeatedly shown that individuals are more likely to participate in benefit plans that are opt-out, rather than opt-in (read more herehere, or here).

These proposed changes are intended to change beneficiary health care behaviors.  In other words, if it costs more to see doctors and specialists, and it costs more to have prescriptions filled, maybe you won’t use them as often.  (Of course, if you miss the sign-up window, you won’t be using them at all that year.)

There are many ways to respond to these proposed changes.  I choose to respond to a future that most-likely includes increased healthcare fees by taking actions to improve my health.  How about you? Why not take control of your health and your finances by practicing informed preventive health and avoiding increasingly more expensive co-pays?  You may find that managing your health through diet, exercise, meditation, or other self-care practices could reduce your need for medications and reduce the frequency of your visits to the doctor.  Why not focus on the part of the equation you can control?

Food, Glorious Food! What’s the Right Diet for You?

Most military members maintain a healthy weight.  But once you’re separated/retired from the military, or if you’re disabled, the pounds can creep on.  And once you reach middle-age, often they’re not creeping anymore – they’re double-timing!

Diets?  Chances are you’ve tried more than one: Cabbage soup; Atkins; Pritikin; Mediterranean; South Beach; Paleo; Juice fasts; etc.  We all know the drill: throw out the “bad” food in your house; buy all new “healthy” food; follow new regimen until you can’t stand it anymore; revert to old eating habits; beat yourself up over “lack of discipline”.

If you have a health condition, it can get more complicated.  Your doctor may recommend a specialized diet, or give you a list of foods to avoid, or send you to an allergist to be tested for food allergies.

For years I tried various diets, read labels to avoid certain ingredients, and was an annoying dinner guest.  I had some success with reducing my symptoms and lost weight a few times, but mostly remained overweight, bordering on obese.

And then a friend recommended a series of three BBC videos called “What’s the Right Diet for You?”  In this series, experts from Oxford & Cambridge universities explain new research that suggests that diets are not one-size-fits-all; instead, personalized diets based on your biological and psychological profile are much more likely to work for you.

The researchers illustrate by dividing volunteers into three groups, which they call “Constant Cravers”, “Emotional Eaters”, and “Feasters.”  According to the researchers, Constant Cravers have a genetic predisposition toward overeating because their genes disrupt the signals to their brains which normally tell someone that their fat stores are sufficient and that they should stop eating.  As a result, Constant Cravers are always hungry, because their brains are constantly trying to store up fat regardless of the actual state of their bodies.

Emotional Eaters, on the other hand, eat in response to stress or unhappiness, and tend to prefer foods that are higher in sugar and fat when stress-eating.  The third group, Feasters, tend to overeat because they have lower than normal levels of the gut hormones that signal to the brain that they are full and should stop eating.

There are short excerpts from the BBC videos that illustrate the three categories.  This is the one for Feasters:

and this one covers both Emotional Eaters and Constant Cravers:

Unfortunately, the actual videos are not available in the US & Canada, and have been pulled from YouTube.  But you can find more information at the BBC website  or the Oxford website.

You can also take an online test to help you determine if you fall into one of these three categories, and you can download diets for each of the three categories: Constant Cravers; Emotional Eaters; or Feasters.  Or you could download a free ebook from the BBC website that is interactive and explains all three categories, as well as techniques for each group for losing weight and maintaining a healthier weight once you’ve reached it.

For me, it was very helpful to learn the science behind why I tend to overeat.  When I failed at previous diets, I assumed it was a willpower problem.  But now I know I was fighting my biochemistry, with inadequate weapons.  I had had some success with previous diets, but this information helped me dial in which aspects of previous diets had been beneficial and why.

Instead of eating or avoiding certain foods because I “should” or “shouldn’t” eat them, I now know if I eat this, I will feel full; but if I eat this, I will keep feeling hungry.  So now I’m much less tempted to eat things that will lead to a negative result.  AND, by sticking to my new eating plan, I don’t have cravings (most of the time).  So I don’t have to fight the urge to eat things I “shouldn’t” because I no longer have the urges.  (Well, except for dark chocolate.  I still eat a few squares of dark chocolate from time to time.)

This research helped me sort through all the noise and conflicting advice (low-fat! low-carb! Paleo! Vegan!), and find a simple way to lose weight.  Perhaps it will help you as well.





Negative, Ghost Rider, the Pattern is Full – How My Quest Began

Have you ever read Catch-22, Joseph Heller’s novel about airmen in WWII?  Even if you haven’t, you’re probably familiar with the expression.  Catch-22 is a situation that presents a logical paradox – such as when, in the book, Major Major gives orders that people are only to be admitted to his office to see him if he is not there.

I experienced a Catch-22 situation with my healthcare recently.  After spending a great deal of time selecting an in-network primary care manager (PCM), I found out the night before my appointment that Tricare was not permitting patients to establish new relationships with non-Military Treatment Facility (MTF) providers.  However, the MTF near me was at capacity, and not currently taking new patients.  Thus, I could not go off-base for medical care, and I could not get an appointment on base.

Tricare’s solution was to send me to an MTF much further away, to a PCM who has no specialized training in my particular health conditions (unlike the network PCM I had selected).  Having no other choice, I saw this provider, and requested a referral to a specialist.  He denied my request and opted to treat me himself, prescribing two medications that are contraindicated for my condition, and could kill or further disable me.  Although I expressed concerns about the prescriptions both to the PCM and to the pharmacist, they both dismissed my concerns.

It’s difficult to describe the frustration of dealing with a chronic health condition that doctors can’t seem to get a handle on.  But after a decade-and-a-half of being prescribed medications that did not cure my condition and produced horrible side effects, I was simply not willing to gamble that this time would be any different and this provider would have the solution.  When I confirmed that the World Health Organization had issued guidelines never to prescribe to someone with my condition one of the medications that my new PCM had just prescribed to me, it was the last straw.

Faced with a debilitating medical condition and inadequate healthcare, I weighed my options.  I met with my PCM again.  He again refused to refer me to a specialist, and wanted to prescribe different medications.  And then I learned that Tricare has a procedure whereby complicated cases can be assigned a case manager, who will help advocate for the patient.  I emailed the MTF patient advocate’s office and requested a case manager, but they never responded.

While I was waiting for the response that never came, I found a blog that advocated self-sufficient living, including holistic self-healing using medicinal herbs, diet, exercise, and common sense. And I decided I had had enough of being experimented upon by PCMs who (mostly) didn’t care about my well-being for longer than the 20 minutes it took to get me out of their office. After nearly a decade-and-a-half of treatments that usually left me sicker, I decided to try naturopathic self-healing.

To me, this means utilizing evidence-based natural solutions when possible, such as using house plants to improve the quality of the air in my house, rather than buying an air purifier.  But it also means employing traditional medical procedures when necessary or beneficial, such as routine screenings, surgery, physical therapy, or psychological counseling.  The objective is to use all of these methods as tools, rather than being treated like one.