“Patient-friendly phrases” is the result of an exciting collaboration between arthrofibrosis patients, our wonderful IAA Ambassadors and the IAA Committee. Special thanks to Claudia-Iulia Nedelcu, Sara Katrine Jandrup, Toma Vasilescu and Florencia Pistritto. We hope this blog will be a useful resource for clinicians (doctors, surgeons and physiotherapists) and patients, and help people negotiate what can be a difficult path.
The goal of language is to be understood. Clinicians can use phrases that inform, educate and reassure, helping to establish trust and respect and empowering people to direct their own care [1]. However, choosing the right words to achieve this aim is a real skill that needs training to perfect, and this is frequently lacking. In addition, clinicians are often pressured for time and rely on verbal shortcuts, metaphors and technical jargon that can be misunderstood, creating needless anxiety [1]. On the other hand, the IAA believes that the clinical diagnosis of arthrofibrosis should not be overly simplified. For example, “active arthrofibrosis”, where there is pain as well as lack of function, is a technical term that should be carefully explained and not referred to as “stiff knee” (or shoulder, elbow, ankle), because “stiff” sounds dismissive and misses the point. As a result, the patient will likely feel that the clinician has not listened and is not well informed. Research indicates that nonspecific diagnostic labels and explanations can reduce patient satisfaction, leading to frustration and annoyance compared to a structural explanation and diagnosis [2].
Perhaps arthrofibrosis is something of a special case regarding the need for clear communication, because “arthrofibrosis” is not a word in common usage and there is no shared understanding of it, and what it means for a person’s life. Usually, the first time that patients hear it is during their diagnosis when they’re in pain and feeling vulnerable and afraid, and a poor choice of words by the clinician can be devastating. At the IAA we hear that it’s common for arthrofibrosis patients to feel overwhelmed, confused, dismissed or even blamed by clinicians, usually despite the best intentions of the clinician to help. Unfortunately, clinicians often remain unaware of this potential for harm and the fact that their words have a strong influence on a patient’s thoughts and actions. Language is a powerful tool, made more powerful because clinicians hold a lot of authority. An individualized explanation of a person’s symptoms and how the management plan will benefit them makes patients feel empowered to manage their symptoms and respected [3]. Research shows that kindness, empathy and “realistic optimism” are appreciated by patients [3]. Of particular importance, people are cautious about the use of purposefully optimistic language, which can be perceived as disingenuous, dismissive or lacking credibility [3].
The IAA supports clear, honest communication with time to explain the condition, the approach to treatment, and how it’s supported by the evidence. Straightforward terminology should be used to explain what is happening, and although metaphors can help people to understand a complex process, they need to be carefully chosen and explained to avoid confusion [1]. It’s also helpful for the clinician to acknowledge the limits of their own understanding and to use positive, rather than negative, statements to reduce anxiety. For example, the negative phrase “your muscles are weak” will likely raise anxiety and lower the patient’s expectations. Research also recommends that clinicians ask for feedback from the patient to be sure that they have understood, asking them to repeat what they have been told. In addition, providing a specific timeframe for follow-up is reassuring and people felt that their autonomy was respected [3].
Here is our list of words and phrases provided by people with arthrofibrosis and IAA Ambassadors, with interpretations and possible solutions based on the literature. There are no published studies on this topic for arthrofibrosis, but research into other conditions can guide us. Here is the key to the symbols we use in the list:
🛑 Red Light Phrase - What might cause confusion or harm
🤔 Patient’s Perspective - How patients might interpret the phrase
🚨 Potential Reaction - What could happen as a result
✅ Green Light Solution - What clinicians could say instead
💡 Tip - Practical advice for avoiding miscommunication
We feel that these words and phrases are important and could lead to serious negative consequences if misinterpreted. We use “knee” for convenience, but these phrases apply to arthrofibrosis in any joint:
Problematic phrases and suggested alternatives
🛑 "Stay motivated."
🤔 "Don’t get lazy; do more."
🚨 Feels blamed; starts strength exercises too early.
✅ "Don’t lose hope. Many people find that their symptoms improve over time."
💡 Frame encouragement as optimism; highlight achievable progress.
🛑 "No indication for treatment."
🤔 "You don’t want to help me; you don’t believe me."
🚨 Finds a surgeon who does not recognize the risk; feels hopeless.
✅ "I don't know how to fix this surgically; it’s too risky to operate on this knee as it would likely activate the arthrofibrosis."
💡 Acknowledge the limits of your understanding; refer to an arthrofibrosis specialist if necessary.
🛑 "Aggressive physiotherapy is mandatory."
🤔 "You must push through the pain."
🚨 Risks increasing inflammation and fibrosis by exercising the affected limb.
✅ "Daily stretches and carefully tailored exercises are important."
💡 Emphasize gradual, tailored therapy without pain.
🛑 "No MRI evidence of injury; your MRI is unremarkable."
🤔 "You think I’m imagining things."
🚨 Feels dismissed; experiences anxiety and confusion.
✅ "The tendons and ligaments look normal in your MRI, but we’ll explore other possible causes for your pain."
💡 Validate concerns; discuss next steps transparently.
🛑 "Stay positive."
🤔 "You don’t want to know how I feel."
🚨 Feels rejected or dismissed.
✅ "Don’t lose hope, we can make progress."
💡 Acknowledge the seriousness of the situation and assure them of your ongoing support.
🛑 "Don’t worry."
🤔 "You think I’m overreacting."
🚨 Feels dismissed.
✅ "Don’t lose hope, we’ll work together to improve things."
💡 Acknowledge the seriousness of the situation and assure them of your ongoing support.
🛑 "It’s just stiff."
🤔 "Stop complaining, there’s nothing wrong."
🚨 Feels dismissed; pushes through pain.
✅ "You have arthrofibrosis. I’ll explain what that means and what we can do about it."
💡 Offer support and validation; acknowledge the limits of your understanding.
🛑 "Arthrofibrosis patient."
🤔 "You don’t see me as an individual."
🚨 Feels a loss of identity and helpless.
✅ "Person with arthrofibrosis."
💡 Listen with empathy and respect; avoid convenient labels.
🛑 "You should avoid activity."
🤔 "Don’t do anything, don’t even move."
🚨 Fear of all exercise, or denial and pushes through pain.
✅ "Exercising other parts of your body is good, but your knee needs time to get happy before you exercise it."
💡 Explain the reasoning behind treatment decisions; highlight achievable progress.
🛑 "There is nothing I can do for you; you have Chronic Regional Pain Syndrome (CRPS)." [Scenario 1: fits CRPS criteria]
🤔 "I have something really bad, and nothing can be done."
🚨 Feels anxious and confused.
✅ "Your nerves are injured. CRPS is not my specialty, but I’ll refer you to a specialist to discuss treatment options."
💡 Offer support and validation; refer to a specialist.
🛑 "There is nothing I can do. You have Chronic Regional Pain Syndrome." [Scenario 2: doesn’t fit all CRPS criteria]
🤔 "Why would you say that? You don’t want to help me"
🚨 Feels rejected or confused; takes unnecessary medications for CRPS.
✅ "I don’t know why your knee has reacted this way."
💡 Acknowledge the limits of your understanding; refer to an arthrofibrosis specialist.
🛑 "There is nothing wrong with your knee!" (Failure to diagnose)
🤔 "You’re a hypochondriac; you’re lying."
🚨 Patient pushes through pain to comply with instructions.
✅ "I don’t know why your knee has reacted this way."
💡 Acknowledge the limits of your understanding; refer to an arthrofibrosis specialist.
🛑 "You’re an 'overreactor'."
🤔 "You’re a hypochondriac."
🚨 Feels rejected or blamed.
✅ "Your knee is very sensitive."
💡 Listen with empathy and respect; acknowledge the limits of your understanding.
🛑 "Only 1% of arthrofibrosis patients escape surgery."
🤔 "I will definitely need surgery; feels pressured to have surgery."
🚨 Won’t try non-surgical approach.
✅ "Over time, many people find they’re able to do more. For some people, surgery can help."
💡 Explain the reasoning behind treatment decisions; highlight achievable progress.
🛑 "Your arthrofibrosis isn't so bad; I've seen worse."
🤔 "They don't realise how much this disability impacts my life, something needs to be done"
🚨 Feels rejected; pushes over the limits of their joint.
✅ "Over time, many people find they’re able to do more; surgery is too risky due to the location of fibrosis or timing."
💡 Explain the reasoning behind treatment decisions; highlight achievable progress.
🛑 "Your pain may be neuropathic."
🤔 "My brain is wrong; it’s all in my head."
🚨 Confusion, anxiety.
✅ "You may have nerve injury."
💡 Be clear and simple.
🛑 "Keep going/work harder."
🤔 "Feels blamed; starts strength exercises too early"
🚨 Starts strength exercises too early or pushes through pain.
✅ "Only exercise the affected leg as tolerated and adjust according to the response"
💡 Acknowledge the limits of your understanding; refer to an arthrofibrosis specialist.
🛑 "I’m never going to operate on your knee again."
🤔 "You don’t want to help me anymore."
🚨 Feels abandoned and without hope.
✅ "It’s too risky to operate on this knee as it would likely activate the arthrofibrosis."
💡 Offer support and validation and refer to appropriate specialists.
A final word from Kayley Usher: 'Compiling this blog has been educational for me. I personally dislike the word “patient” and prefer “person with arthrofibrosis”, but I use the verbal shortcut “patient” here and elsewhere because it’s convenient. However, to me, the word “patient” reduces a complex individual to a medical category that most people with arthrofibrosis feel they don’t belong to, damaging their sense of self and potentially making the person feel helpless and dependent. Please let me know what you think about this label, and others, in the comments section.'
Share your problematic phrase with us in the comments below.
Legal Disclaimer
The materials presented in this site are provided voluntarily as a public service. It is of a general nature, based on the scientific literature. The information and advice provided is made available in good faith but is provided solely on the basis that readers will be responsible for managing their own assessment of the matters discussed herein and that they should verify all relevant representations, statements and information. Please consult your doctor.
References
Bedell, S. E., Graboys, T. B., Bedell, E., Lown, B. Words that harm, words that heal. Arch. Intern. Med. 164, 1367 (2004).
Haber, T. et al. Effects of Hip Pain Diagnostic Labels and Their Explanations on Beliefs About Hip Pain and How to Manage It: An Online Randomized Controlled Trial. Journal of Orthopaedic & Sports Physical Therapy 53, 673-684 (2023). https://doi.org/10.2519/jospt.2023.11984
Lyness, E. et al. Exploring patient views of empathic optimistic communication for osteoarthritis in primary care: a qualitative interview study using vignettes. BJGP Open 5 (2021). https://doi.org/10.3399/BJGPO.2021.0014
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