RECOVERING FROM ILLNESS
Osteopathic doctor Andrew Kirschener tells a story in his book Back Together: Hands-On Healing for Couples that I’ll always remember. He had two patients, both with fibromyalgia, an almost mystical and poorly understood pain syndrome that can be a very debilitating condition. One patient continued to live an active lifestyle, visiting her grandkids and volunteering in the community. When asked how she felt, she was always in a good mood. The other patient was on disability from work, stayed in an unhappy relationship because her partner was the only one who would “put up” with her and she never had any stories to tell on what she’d been up to lately. When asked how she felt, the answer was always negative; she was always in so much pain. Is it possible her physical pain was just that much worse than the first woman’s? Could that explain why one’s life had been completely derailed and the other seemed so much less affected? Dr. Kirschener had each of the women regularly answer questions on how much pain they felt, where, on a scale from 1-10. Their answers were consistently identical, except in a few areas where the first woman’s was actually worse. So what then could be the difference? The difference was that one was a person with an illness and the other was an ill person. It was all mental. It came down to their attitudes, how they approached their treatment and their lives.

I don’t have fibromyalgia, thank goodness, but my diagnosis is unfortunately no better understood. I’ll freely admit to flip-flopping on whether I’m someone with an illness or someone who’s ill. I recognize that sometimes I get into a bit of a depression over this or that ailment (I’ve had more than my share!). When I’m in that mental space, I’m most definitely ill, not just someone with an illness. But then other times I forget about it and just live my life anyway.

Unfortunately, that usually means that I also start getting lazy about doing all the preventative care that I know darn well I need to do to prevent more bad episodes. That’s not good either, because then I eventually relapse and land right back into “poor me” mode until I can claw myself out again.

They say identification of the problem is half the battle, right? I hope so.

I can’t talk about this without spending at least a little time talking about the attitudes I’ve encountered in Western medical doctors. I once had a specialist tell me that they don’t know the cause of the disease, so he can’t tell me how to cure it, but that’s not important anyway. What’s important is treating the symptoms. WHAT?!?!? I couldn’t believe a doctor would actually say that! It’s so counter to everything I believe is fundamental to true health! I’ve had another specialist for something else answer my question on how to prevent his dire predictions for me by saying that there’s nothing I can do. Not a single thing. Here are the signs I need to know and when (not if) I start experiencing these, I’m to go to the emergency IMMEDIATELY, or [more dire predictions] will happen.

Lovely.

Is it any wonder I occasionally get depressed over ill health and feel there’s nothing I can do about it? I’m just following doctor’s orders it would seem. I once got desperate enough to find something – anything – that would work, that I gave into the doctor’s pressure to take pain medication. And now I know what it’s like to recover from pain medication addiction. Are we feeling better yet? Thankfully, both my husband and I recognized what was happening very quickly and with his help, addiction lasted only days for me. That’s still something that no one should have to experience. As a side note, I’m very grateful I’ve never tried tobacco or any other drugs to speak of – I’ve sufficiently proven to myself that I’m far too sensitive to substances! I even try to avoid any prescription and over the counter drugs now as much as possible, I often react poorly (or is it too well?) to them.

Thanks to these Western medical attitudes, I’ve also spent years struggling with pain, fear and confusion and have not gotten any closer to finding a true long term treatment, let alone a cure. Dr. Kirschener remarked on these attitudes as well. Back pain is such a common ailment – just look at how many quick fix remedies there are on the market for it! So when he became known for writing a book on how to heal back pain, he was sure he’d see his business pick up. That didn’t happen. It turns out back pain is something most North Americans just live with and never do anything about. There are so many readily accepted excuses for it and many even accept it as a natural part of aging. There’s also the prevalent view that treatments don’t work (news flash: quick fixes don’t work), or else the treatment is more painful than just living with it. But you see, pain is your body’s natural mechanism to tell you there’s something wrong. If you ignore it or mask the symptoms with medication, you allow it to get worse. If you never sort out the true cause, it will never go away (thus perhaps also perpetuating the belief that it can’t be healed).

I’ve sometimes envied people with conditions that cause them pain everyday. Sometimes in my twisted world, that seems better than never knowing when it’ll strike and when it’ll lift. At least if it was consistent you’d know what to expect. You could make plans and know that you’ll in all likelihood be able to keep them. I can’t count the number of times I’ve missed work, school and social engagements with no notice because of my health. My family doctor recently called it a “quality of life” issue – that’s an understatement!

If it were constant, I imagine it would also be easier to maintain motivation on the “good days”, because even on the good days there would be some reminder of why you need to keep up with your treatment plan. When it comes and goes, according to no noticeable pattern (trust me, I’ve looked for patterns!!!), it teaches you what’s called learned helplessness.

Learned helplessness is when you’ve tried and failed to improve your situation so many times that you cease to believe that changing your situation is within your control. You’ve just learned to accept it.

The thing is, when it comes to your health, you’re never truly helpless. The right diet and exercise alone can make all the difference in the world, even if what you’re fighting is genetic. Just changing the way you think about it can also improve things, like in the opening story. Finding the right advice and help is always a goal to keep fighting for too. The internet is a powerful tool to connect to people who have had similar struggles and are willing to share their insights and support. The internet has helped millions of people realize that they are not alone. Educating yourself on potential diagnosis and treatments seems to me to be fundamental these days to receive proper care. They even have a term for it now: being a “proactive patient”.

So here I am again, taking another stab at the can, being as proactive as I can. This time trying the alternative route a little more strongly (despite my doctor’s refusal to recommend it), before it gets worse again. I’m getting pressured again, this time to agree to an exploratory surgery (although they use fancy words to make it sound more credible). I continue to refuse. Perhaps some of the logic behind my refusal is paranoia on my part, but I’m well aware that an accepted form of treatment is to remove the organ entirely. That’s not something that I’d consider as acceptable treatment. And yet I’m told that I’d have to sign an agreement to let the doctor do whatever they felt is best once in the operating room instead of doing two surgeries (one for the diagnosis and one for the treatment). I’m not comfortable with that – I don’t trust their judgement, or rather their training and cultural attitudes. I’m also well aware that any other treatment they could offer me, besides removal of the organ, is a band-aid solution designed only to treat the symptoms for awhile. So I continue to lobby for an alternative that I hope will have a more holistic view.

The holistic view is also the stance that most so-called “alternative” therapies take. Therapies such as acupuncture, naturopathy, osteopathy, Chinese herbal medicine and countless others are generally referred to as alternatives, or possibly “complimentary” medicines. The underlying implication of those terms is that they are second best to Western medicine. You only go to them if you’re desperate and can’t find anything else to work. That has largely been the way it has been in North America ever since they were introduced here. I consider this a shame because I have always had better results with the “alternatives” whenever I’ve tried them. The goal with them is invariably to root out the true cause of the ill health and fix that. These practices, techniques and philosophies have been catching on, maybe not everywhere in the West, but certainly in a lot of places. The Western trained doctors and insurance companies have had trouble catching up! They don’t know what therapies to recommend to someone looking for an alternative and much of it either isn’t covered at all by insurance or the rules to qualify are so strict to be prohibitive. For example, I’ve been told for acupuncture to be covered by my insurance, the acupuncturist has to be a physician (an M.D.). A doctorate in oriental medicine doesn’t count, nor do any other qualifications that are specific to the field. Good luck finding someone who qualifies! If you do manage to get it covered, chances are it’s through a loophole of some sort. And yet I’d have no trouble whatsoever getting more pain medication and having that be covered by my insurance.

I’m told I’m an optimist. I don’t always know that I am. But I guess I must be, because I do still have hope. Maybe I am just someone with an illness after all. Maybe I’m a recovering ill person.

Margaret Bailey lives in Ottawa with her husband and two cats. She believes strongly that knowledge is only useful if applied and shared. She strives to be a light to all who cross her path or walk with her awhile.