Unheard & Uncomfortable: Rethinking Lymphoedema Care
Why Flat-Knit Isn’t Always the Best Choice for Arm Lymphoedema
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Hello fellow Lymphies!
If you’ve been living with lymphoedema for a while, you’ve probably heard the phrase “the gold standard” tossed around — especially when it comes to compression garments. Therapists often recommend flat-knit garments as the ultimate solution for managing lymphoedema. And while flat-knit has its place, there’s a growing problem: too often, it's treated as a one-size-fits-all answer — even when it’s not the best fit for your needs.
But here’s the thing — when patients feel unheard, they don’t just suffer physically. They also lose confidence in their care providers. I know this firsthand. After struggling with an uncomfortable flat-knit garment that didn’t suit my lifestyle, I returned to my orthotist to ask for a better solution. My concerns were dismissed outright — no discussion, no alternatives. I didn’t just leave frustrated; I never went back. Worse yet, I avoided recommending that practice to others.
This isn’t just about garment choice — it’s about trust. When patients feel unheard, they leave. And when they leave, they tell others. But here’s what’s even more concerning — when a patient leaves a therapist, they may not immediately find another one. Patients who walk away may end up walking away from essential care altogether.
For therapists, that means missed opportunities to build long-term relationships with patients who are eager to stay engaged — if they feel their concerns are valued. For patients, it means delayed treatment, prolonged discomfort, and greater risk to their health. Nobody wins.
In this post, I’ll reshare my experience with the Great Gauntlet Debacle (spoiler: it wasn’t pretty), but go deeper into why flat-knit isn’t always the right answer for arm lymphoedema, and give you practical tips for pushing back — respectfully — when you know there’s a better solution.
Understanding Your Rights as a Patient:
The Ethics of Lymphoedema Care
While therapists are often well-intentioned, their approach must align with core ethical principles in healthcare. If you feel your concerns are being dismissed or your preferences ignored, you have rights as a patient:
- Autonomy (Your Right to Choose): You have the right to make informed decisions about your treatment. If a therapist insists on flat-knit without explaining other options, they may be limiting your ability to make an informed choice.
- Beneficence (Acting in Your Best Interest): Therapists should recommend solutions that maximize your comfort, mobility, and overall well-being. If a circular-knit garment would manage your condition effectively with less discomfort, ignoring that option may contradict this principle.
- Non-Maleficence (Do No Harm): If your therapist’s well-meaning insistence on flat-knit causes pain, discomfort, or reduces your ability to stay active, this may inadvertently cause harm — even if unintended.
- Informed Consent (Providing Full Disclosure): Ethical practice requires that your therapist explain all viable treatment options — including circular-knit — so you can make the choice that’s best for you.
- Justice (Fair and Equitable Care): Overprescribing flat-knit when more comfortable options are available could place an unfair burden on patients by pushing costly, restrictive treatments that may not be necessary.
A well-meaning therapist may believe they’re following 'best practice,' but failing to explore alternative solutions undermines these core ethical values. While flat-knit garments can play a critical role in severe cases, overly rigid adherence to this 'gold standard' — without considering individual comfort and condition — can compromise care. Patients deserve better.
To every breast cancer survivor facing lymphedema: Your strength inspires us. Together, we can raise awareness and improve care.
Why Flat-Knit Isn’t Always the Answer
Your legs are far more prone to severe swelling than your arms. Gravity, venous pressure, and the fact that your legs are weight-bearing make them more vulnerable to fluid buildup. This is why flat-knit garments are critical for managing severe swelling in the legs — they provide firm containment for tissue that simply won’t manage itself otherwise.
Studies have confirmed key differences between arm and leg lymphoedema:
Lower extremity lymphoedema occurs in roughly 80% of cases. Since leg lymphoedema is more prevalent, much of the limited research into lymphoedema has been focused on leg-focused treatment approaches — caution should be used in directly translating these therapies to arm care. Involvement of the patient and their needs is critical.
Garment choice should be based on clinical findings rather than a one-size-fits-all approach. Research by Reich-Schupke and Stücker emphasizes the need to tailor compression solutions to individual patient needs.
In South Africa, breast cancer is the most common cancer among women, according to CANSA (Cancer Association of South Africa). Since international studies estimate that roughly 20% of breast cancer survivors develop lymphoedema, there’s a significant number of women in South Africa potentially facing this condition. Considering South Africa’s healthcare landscape, including limited access to specialized lymphoedema care in rural areas, advocating for appropriate, effective, and comfortable garment options becomes even more important.
For more information on breast cancer in South Africa, visit CANSA.
The Flat-Knit Fiasco
(A.K.A. The Gauntlet Debacle)
My very first sleeve was a full arm flat-knit sleeve with built in a gauntlet. Spoiler alert: it was a disaster. I honestly don't know how these are on the market.
In my Great Gauntlet Debacle post, I described the battle I had with that sleeve — every elbow bend felt like an extreme sport, my hand was perpetually red and irritated, and removing the thing in a public restroom felt like finishing an upper-body workout in the middle of a crowded space. I affectionately nicknamed my arm 'Big Bertha' during this period — a reminder that the wrong garment can become its own burden rather than a helpful solution.
It took 4 years before I would consider another flat knit and my experience with those are mixed. Only 2 out of the 4 custom flat knit garments I've been prescribed have been wearable, which represents a significant cost consequence. I must be fair. I agreed to experiment with sizing to see if we couldn't get more reduction and I'm not actually critiquing the therapists... just noting that the costs are significant when these garments don't work out.
In short, while flat knit garments do make up one tool in my toolkit, they have not been my most accessible or reliable option. My circular knit garments are far more consistent in being wearable and comfortable — a critical reminder that "gold standard" solutions aren’t always the best choice for stable, manageable lymphoedema.
Feeling inspired?
This is the Maraposa Sleeve, brought to life with the artistry of Photoshop to showcase its fit and design. While we strive for accuracy, real-life results may vary.
Coming Soon:
Why Waiting to Get a Sleeve Might Be a Mistake
Another common concern I’ve seen is therapists waiting to prescribe compression garments until they've 'gotten the swelling down.' But in many cases, that delay can mean patients miss the window to stabilize their condition early. In my next post, I’ll explain why getting into an off-the-shelf compression garment sooner — rather than waiting for your therapist to “approve” one — can be a better approach.
In Closing:
Advocate for Your Comfort and Health
Just because a garment is “the gold standard” doesn’t mean it’s right for you. In my "Advocating for Your Health" post, I shared insights from medical aid expert Michelle Hey on how to push for coverage on the treatments and garments that truly meet your needs.
You deserve a garment that supports you — not one that feels like you’re wrestling with a straitjacket every time you wash your hands. So if you’re feeling pressured into a flat-knit garment that just doesn’t fit your lifestyle, speak up! Your comfort, mobility, and quality of life are just as important as compression strength.
Your Turn
Let's hear it from you!
Don't let the 'gold standard' dictate your comfort. Ask the questions that are important to YOU! It's not often that our voices get heard.
We also want to remind you that the opportunity to be included in the Council of Medical Schemes webinar is still open. This is a platform for you to ask questions specifically about your medical schemes and navigate those complexities. Get in touch to be added to the waiting list.
