You Don’t Know

By: Ann Smith

You don’t know what it is like.

You don’t.

You don’t know what it is like to wake up every hour of every night, all night, because you can’t get comfortable.

You don’t know.

You don’t know what it is like to have to give yourself a pep talk every morning merely to get out of bed and get dressed, sometimes fighting back tears because you have told yourself that you are a warrior.

You don’t know.

You don’t know what it is like to work with a smile on your face when your legs feel like they are full of cement and every single step is just more agony.

You don’t know.

You don’t know the utter guilt that courses through the veins when you have to call in sick because that morning pep talk? It couldn’t be heard over the vomiting from the pain.

You don’t know.

You don’t know what it is like to have health professionals roll their eyes at you when you express that the current “drug cocktail” you are taking is no longer working, and you need a new plan.

You don’t know.

You don’t know the feeling of dread that comes with every emergency room visit, because you were trying to avoid the doctor and the rolling eyes… only to be met with the hidden label of “drug seeker” upon entering.

You don’t know.

You don’t know the wails and screams from your mind and soul as you can systematically see friends and love ones drift away because you couldn’t make it, or had to cancel too many times for their comfort, or you no longer resemble the “Good Time Buddy” that has faded into even your own memory.

You don’t know.

You don’t know what it feels like to have people tell you that you should “eat this” or “exercise this way” or “just push through the pain”…only knowing that none of the options work; because you have tried them all.

You don’t know.

You don’t know what it feels like to have every part of your person and life scrutinized: to be told you don’t feel well because you are too thin, or too fat; that you aren’t exercising; or you’re exercising too much; that you aren’t getting enough vitamins or you aren’t getting the right vitamins. Even clothing choices, shoes, moisturizer… you name it, you’re doing it wrong.

You don’t know.

You don’t know what it’s like to want to do things with your child or children, and knowing that there are usually 2 outcomes: you give in and do what your child wants, knowing that you will be in bed for the next 2 days, or do your best to convince your child that he best activity is watching TV shows and/or movies—because these will at least not cripple you.

You don’t know.

You don’t know how tiring the rhetorical question “How are you feeling?” gets.

You don’t know.

You don’t know how it feels to even attempt to explain something that no one can see, much less understand.

You don’t know.

You don’t know how frustrating and angering the phrase “But you don’t LOOK sick!” can be.

You don’t know.

You don’t know what it’s like to hide and cry, because most of the people in your life are tired of dealing with your “issue”.

You don’t know.

I know you know what it’s like to be sick.

You just don’t know what it’s like to never get better.

I chose the poem above titled; “You don’t know ” by Ann Smith because it reminded of one of my patients who came in with excruciating shoulder pain. This poem describes how other people are not understanding of the state people in pain are in and the difficulties they experience because of their state which depicts how my patient might have felt during our session and her response to our session.

Treatment refusal is a common encounter in clinical practice. The above poem is based on an incident I encountered during one of my clinical rotations where one of my patients refused a treatment session with me because she was in excruciating pain. She had sustained a proximal humeral fracture in the beginning of the year and 3 months down the line she still could not actively move her shoulder. During my subjective assessment I found out that she had not previously seen a physiotherapist after sustaining the fracture and by the time  she came in for physiotherapy she had already developed secondary complications.  Determining why she had not previously seen a physiotherapist was challenging because of the language barrier.

During the first session the patient refused to continue with the treatment because she was in pain, I advised her to do a couple of active exercises and prescribed home exercises that she should do so that the next session will be less painful. The next session was where the patient completely refused to do treatment and stated that I was incompetent due to my lack of empathy towards her.  I consulted with the senior physiotherapist and she advised that I explain to her the importance of treatment and the detrimental effects non-treatment would cause.

As a student physiotherapist I knew the importance of her receiving therapy and empathised with the fact that she was experiencing pain and how difficult and frustrating it was for her to execute her daily activities as she previously did before but it was within my best interest and the interest of my patient to treat as soon as possible. I explained the importance of her receiving treatment and how it will be beneficial for her and improve her lifestyle. However she still refused treatment even with the knowledge provided to her.  I gradually started showing no empathy at a point because I started getting agitated at the fact that she did not see the importance of treatment. It was a challenging situation in managing her when she did not listen to our advice or adhere to our management plan which we thought was best for her. This led me to requesting her to sign off that she was okay with not receiving treatment and that she understood the consequences that might emerge and I would not be held liable to any further complications she might develop.

According to the Patient’s Rights Charter a person may refuse treatment and such refusal shall be verbal or in writing provided that such refusal does not endanger the health of others. The National Health Act provides that health care providers (this includes health care practitioners) must inform patient’s their right to refuse health services and explain the implications, risks and obligations of such refusal. (The health Care Professions Council of South Africa, 2008).  However deciding whether someone is legally competent to make decisions regarding their own treatment requires an assessment of their mental capacity. The assessed capacity required for legal competence increases with the seriousness of what is at stake (Buchanan, 2004).

From this experience I learnt that patients sometimes refuse treatment because they would prefer working with an individual they are more comfortable and find it easier to communicate with. I also learnt that in cases where patients come in with severe pain and you would like to do tests as a physiotherapist to determine the structure(s) at fault, it is better to always try and treat the pain first and progress to the specific tests one would perform thus making easier for the patient to perform active movements  in less pain.

References

A,. Buchanan, 2004. Mental capacity, legal competence and consent to treatment. Journal of the Royal Society of Medicine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079581/

The Health Care Professions Council of South Africa Guidelines for Good Practice in the Health Care Professions Seeking Patients’ Informed Consent: The Ethical Considerations BOOKLET 9, 2008 https://www.hpcsa.co.za/downloads/conduct_ethics/rules/generic_ethical_rules/booklet_9_informed_consent.pdf