Monday, January 28, 2013
Choices That People with Chronic Diseases Have to Make
As I've mentioned before, I follow quite a few blogs for inspiration, as well as for practical information. One of my favorite is Turning Straw into Gold, written by Toni Bernhard, J.D., for Psychology Today. Toni suffers from chronic fatigue syndrome, if I am not mistaken, and is also a long-practicing Buddhist. Her latest article, titled 5 Tough Choices You Face When Chronically Ill or in Pain, really articulates well the psychological agonizing we tend to put ourselves through on top of our physical ailment.
I encourage anyone with, or who loves someone with, a chronic illness to read the whole article, but I have listed Toni's 5 questions below followed by my own experience with each of them.
1. Do we talk openly about our health problems or do we keep them private?
I used to speak freely with just about anyone, sharing the fact that I have Meniere's disease and how it affects my life. By doing so, I found lots of compassion, support, and understanding. It also helped to explain why I tried not to over commit or that I might not always be able to keep the commitments I had made.
But this summer when I decided it was time to change jobs, I feared discrimination if I were to be open about my condition. So I didn't offer it up. I didn't lie, I just didn't confess anything either. I understand where employers are coming from, they don't want to invest money hiring and training an employee that has an increased risk of not being able to perform their duties or, god forbid, becoming disabled. On the other hand, I felt I was the best person to assess whether or not I could reliably do the job for which I was applying and not leave that up to a speculating employee health nurse or manager who has no clue about me or,most likely, this disease. I had not missed any work days in the past year or more and, since starting my new job six months ago, I have only called in sick once for an unrelated illness. Besides, there's no guarantee if, or when, my Meniere's symptoms will rear their ugly head again. It could be a very long time from now.
I apologize for going off on a tangent, but I think it helps to illustrate why I felt I had to do a 180 regarding my policy of transparency. Before this summer, I never thought I'd hide this aspect of myself from anyone, but then I had a change of heart. In one way, I feel guilty and I hate keeping secrets (my coworkers now understand I am hard of hearing and know I have a hearing aid, but I have been vague as to why), but I am also free of all speculation as to why I might seem under the weather some days or feel I am under the microscope for potentially making errors related to my episodic brain fog.
I don't go out of the way to hide anything about myself, I am still blogging, for instance, and someone could easily enough find it, but I am a little more private these days. I guess I have been afforded that luxury from the Meniere's gods - for the time being. And if word gets out, I'll cross that path when I come to it. At least I now have a record of good productivity and reliability with this new group of people.
2. Do we ignore a new symptom or have it checked out by a doctor?
For months, I attributed my poor cognition and near-constant fatigue to Meniere's. Then, being in my mid-forties, it dawned on me that I could have hypothyroidism or some other unrelated problem that might actually be treatable. Wow, what a concept - a medical condition that might have a treatment! So I made an appointment for a physical, had a whole panel of blood work done, and lo and behold... Nothing! But at least then I knew with relative certainty that indeed my issues were most likely related to This Stupid Disease after all.
Working with cancer patients as I do, I know all too well the consequences of ignoring insidious symptoms. But it's a fine line, as Toni elaborates on in the article.
3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?
This is a tough one for anyone with Meniere's disease who has not responded to traditional medical treatment. I followed my doctor's advice to the letter. I took every pill, avoided salt like the plague, and kept all of my follow-up appointments, each timing reporting another failure in his well-laid plan. He was understanding, to say the least, but he also had little else to offer me, short of taking the next step with a destructive procedure (which I eventually did).
But before crossing that bridge, I ventured off the beaten path. I took a bucket load of supplements peddled by well-meaning individuals and racked up my credit card with chiropractic treatments. I don't regret either, but they helped me understand just how far this disease could push me toward desperation. I can't say I won't ever feel that desperate again. This is a miserable disease when at its worst.
4. Do we push our body to the limit or do we always play it safe?
Up until recently, I felt compelled to keep my life as normal as possible, living it as fully as my symptoms would allow. In other words, I lived up until the second the vertigo set in, being completely unable to think or walk. But last month I read another Meniere's sufferer's account of learning to cope with this Beast. His approach was to put the brakes on all activities at the first hint of an attack. This would be hours, or even days, ahead of when I would begin to slow down. I took his advice to heart and started to make myself take a break and meditate any time my tinnitus started ramping up or when I started to feel off-balance or brain foggy. It has made a big difference and I do think I may just have headed off a few attacks with this method.
My philosophy has been to not let Meniere's take away a minute more than absolutely necessary from my life, but now I realize I have to be proactive, too. By doing so, maybe I will get more of those good (aka vertigo-free) minutes for myself in the end.
5. Should we aggressively fight to regain our health or should we accept our fate?
I am a big believer that once we accept our circumstances new doors will magically open. If, on the other hand, we deny the obvious and simply wish things were different than they really are, it seems somehow that the powers of the universe know this and just needle us more.
What do you think of Toni's questions and how have you dealt with each of them?