Have You Gotten a Trashcan Diagnosis?
Answer: Yes, most likely.
Lipedema women often have vague medical symptoms and, thus, are given a vague diagnosis with little or no follow-up treatment.
If you’re like me, you’ve been dealing with chronic pain and fatigue for years, maybe even most of your life. You’ve been to umpteen specialists, explored alternative healing, been on so many diets, and been given a glut of medications throughout your search for a legitimate diagnosis.
However, many of your symptoms are vague: pain, fatigue, inability to lose weight, swelling, and bruising, to name a few.
And doctors can’t seem to pinpoint the problem. In their eyes, you’re ‘normal.’ But because they need to label these vague symptoms, they’ll slap on a vague diagnosis, something with ‘-itis,’ ‘-ism,’ -algia,’ or ‘syndrome’ at the end.
A Trashcan Diagnosis is “a vague (medical) diagnosis given to a patient or medical records department for essentially non-medical reasons.
It may be given when the patient has a noticeable but unidentifiable medical problem, when a doctor wants to reassure an anxious patient about the doctor's belief in the existence of reported symptoms, when a patient pressures a doctor for a label, or when a doctor wants to facilitate bureaucratic approval of the treatment.” ~source
Most women with Lipedema have been trying to get a credible diagnosis for years, not knowing what’s wrong with their bodies but knowing that something isn’t right.
With lipedema, three primary conditions will increase our chances of getting a trashcan diagnosis: pain, fatigue, and increased body mass.
Some common trashcan diagnoses include:
Chronic fatigue syndrome (for chronic fatigue)
Fibromyalgia (for chronic pain)
A Trashcan Diagnosis is reached from ‘clinical inertia.’ Rather than continue to evaluate the patient's symptoms, they may instead land on a diagnosis of exclusion and miss the more serious etiology of the patient's complaint.
Almost all of these “Trashcans” are actual diagnoses, or at least fundamental components of diagnoses/syndromes. But they are misused as a grab-bag explaining vague symptoms where treatment might improve them (but it rarely does).
And, many times, if your symptoms cannot be explained by medicine, you might be given a psychiatric-based diagnosis, especially if you’re a woman of childbearing age.
When fatigue and pain are often downplayed (which also don’t get proper treatment), a large body mass will put clinicians into autopilot, suggesting adequate diet/exercise, calories in/calories out, and adding “morbid obesity” to your chart as a co-morbid condition.
The biggest problem with these diagnoses is there is no treatment. Any treatment for a Trashcan Diagnosis is usually explored at length from the patient’s side, not from medicine.
The outcome of a Trashcan Diagnosis is:
your provider dismissing your illness
getting treatment for the symptoms but not the cause
going without treatment
getting sicker/feeling worse
As someone with Lipedema, I see the significant effects getting a dismissive diagnosis has on Lipedema women. It leads to inappropriate or inadequate treatment, misunderstanding of their condition, and emotional distress.
Delayed Treatment: A misdiagnosis can lead to a delay in receiving the appropriate treatment for lipedema. Lipedema is often underdiagnosed or misdiagnosed as simple obesity, lymphedema, or other vague conditions. Delaying the correct diagnosis and treatment can exacerbate symptoms and discomfort.
Emotional Impact: Being misdiagnosed or dismissed can emotionally distress us patients. We feel invalidated and misunderstood, frustrated, anxious, and depressed.
Ineffective Treatment: A dismissive diagnosis may result in patients receiving treatments that are not effective for Lipedema. Regarding being diagnosed with obesity, Because Lipedema is a fat disorder distinct from obesity, traditional weight loss methods are ineffective.
Lack of Support: Misdiagnosis can also result in a lack of support from healthcare providers, friends, and family who may not understand the condition. This can lead to feeling isolated and unsupported in managing our Lipedema.
Reduced Quality of Life: Our quality of life is significantly impacted when we don’t receive appropriate care and support. The chronic pain, swelling, and discomfort associated with Lipedema can interfere with daily activities, mobility, and overall well-being.
So, what do we do?
This blog is for Lipedema patients. However, if you're a healthcare provider, please take the time to delve into the intricacies of Lipedema, so you can give patients the accurate diagnoses and tailored treatment options we so desperately need.
And for those of us living with Lipedema, remember, we're not alone. There's immense strength in the support of advocacy groups and online communities where we can find resources and the comforting embrace of shared experiences.
Together, as a united force of patients and healthcare providers, we can rewrite the Lipedema narrative. No one should have to walk this path alone, and I hope that correct diagnosis and treatment become the standard, not the exception.
Thank you for reading Lipedema and Me. Without you, I wouldn’t be doing this!
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Take Care,
Michelle