A common ending to a consultation where I have explained to a patient that there is nothing that surgery/medicine can reliably or safely offer them for their symptoms (back pain, joint pain, limited joint movement etc.) is “So I just have to live with it do I?” A difficult question to answer but also a question that tells us a lot about the person asking it.
In asking that question, the patient is forcing the doctor to treat them by painting the alternative (non-operative) option as being bleak. The patient is saying that it is not reasonable to expect them to continue in their current state – to ‘live with’ the symptoms.
But ‘living with it’ is exactly what they will have to do if there is no ready cure. And living with it can be a good thing. It can mean accepting one’s predicament and developing ways of adapting and coping. It can mean taking active personal responsibility rather than relying on others to deal with the problem – a problem that is often multifactorial and complex, and not restricted to a single identifiable anatomical abnormality.
Depending on the context, ‘living with it’ can also mean being a survivor rather than a victim, understanding one’s predicament relative to others, and focusing on what one can do rather than what one can’t do.
Reassurance and information can help people live with their conditions, much more than further futile attempts to address questionable diagnoses with even more questionable treatments.
‘Living with it’ can be a positive experience. There are many people in the world ‘living with’ all sorts of conditions involving pain and functional limitations, and they remain happy. Pain and suffering are two states that are more separate than most people think. Similarly, the correlation between disability and quality of life not clear.
Happiness is complex and often disconnected from one’s underlying physical condition. If you are unhappy because you have a sore back and can no longer sit for long periods or no longer play golf, you may actually be less happy than people who are physically worse off, and in more pain. In fact, the well-known and well-studied ‘disability paradox’ (here) notes that people with severe disabilities usually report good quality of life. They do not suffer, they thrive.
Acceptance of one’s current situation, acceptance of the fact that medicine may not be able to offer you a quick solution (or any solution at present) and learning to actually live with one’s condition, rather than using the phrase as sign of something undesirable is the first step in recovery. Not recovery from the condition but recovering one’s life and independence. Getting out of the dependency on medicine and taking responsibility for one’s condition and one’s happiness.
A better response than “do it have to live with it”, which I also hear occasionally is along the lines of: “as long as my condition is not progressive I think I will stop wasting my time and money on pursuing further treatments, adapt to my new state and start doing the things that I can, the things that make me happy”.
As someone who has recently had major surgery, I found this very helpful. There's a good chance that I will have to learn to live with a different reality, with extra pain and more limited mobility, but compared to many I feel very fortunate. This was a useful blog at a useful time for me. TaReplyDelete
This is true but still the patient should ask - and ask more than one doctor. If I had accepted my GP's 'you just have to live with it,' I would not have received the injections that are helping my knee problem.ReplyDelete
Good advice, except when you are given the wrong diagnosis, which sends you down a psychological path of despair that you never had to travel that changes your life and your point of view and ultimately how you function due to the psychological despair.ReplyDelete
Doctors need to be skeptical sometimes about their own diagnosis, because often time imaging does not tell the right story. Often --yes, often-- doctors do not even READ the transcripts of the imagaing. They see an "abnormality" that is close to the area of pain or problem and they have their answer and can broom the patient out -- sometimes with trite, wrong advice of "living" with "it". Even though "it" is never really explained as to why the pain. Walking around with no "why" creates despair and leads to suicides. Second opinons often echo the conclusions of the first, because few doctors are willing to call their peers out as wrong.
If you are Doctor Sceptic, be one. With any doubt you may have over a patient. Maybe you do. Many don't. Instead they doom that person to a life of misery.
Okay, I doubt my previous comment will be approved, but too many people I know, including me, have been had wrong dx's tha t lead to years of problems. I had a diseased, swollen gallbladder dx'd as "fat". It was removed just in time.ReplyDelete
Thanks for the above comments. Please don't think that everybody falls into the category I address in this post. I am assuming that the patients have been diagnosed and treated appropriately in the first place. This group of patients is very large - patients with residual problems after disease of injury that cannot be addressed. An obvious one is an amputation - many of my patients with amputations are quite happy, once they have taken charge and adjusted their life accordingly. Less obvious is the patient with residual pain in a joint after injury or from arthritis.Delete
Mis-diagnosis and mis-treatment are problems, but they are a different problem.
COPD is something I've had to learn to live with. Recognizing and accepting limitations does not prevent me from smiling and finding love in my heart. Attitude is fundamental to quality of life.ReplyDelete
"In asking that question, the patient is forcing the doctor to treat them by painting the alternative (non-operative) option as being bleak."ReplyDelete
It is bleak. Many patients who are ill and get to that point ("nothing can be done at the moment" etc.) will have a feeling of momentary helplessness. Asking "so I have to live with it?" is not necessarily synonymous with poor coping skills.
The subsequent happiness and good quality of life you speak of cannot be determined by the immediate reaction to "no treatment".
One may accept the reality but simply be let down that it is now their reality. People are capable of both. Allow your patients a moment to be human.