Health / Women
Why Are Women Still Having to Prove They're Sick?
Long waits for diagnosis, symptoms put down to stress, conditions that barely appear in the records. The problem is not that women complain too much. It is that the system has been slow to listen and slower to write things down.
Long waits for diagnosis, symptoms put down to stress, conditions that barely appear in the records. The problem is not that women complain too much. It is that the system has been slow to listen and slower to write things down.
A familiar story
Ask a group of women about getting a diagnosis and the stories rhyme. Pain described as normal. Fatigue described as stress. Several appointments before anyone orders a test. A sense, often, that the most important work happened before the consultation: rehearsing symptoms, keeping a diary, bringing a friend, preparing to be doubted.
This is not just anecdote. The UK government's Women's Health Strategy for England, published after a public call for evidence, acknowledged that women's voices had too often not been listened to in the health system and set out to change that.
“Being believed should not be a skill patients have to develop.”
Endometriosis: the textbook example
Endometriosis is the condition most often cited, for good reason. The NHS describes it as a long-term condition in which tissue similar to the lining of the womb grows elsewhere, and notes that symptoms vary widely and can be hard to diagnose.
NICE guidance on endometriosis exists partly because diagnosis has so often been delayed. It tells clinicians to consider endometriosis in people with symptoms such as chronic pelvic pain, period pain that affects daily life, and pain during or after sex, and to take those symptoms seriously rather than normalising them.
Guidance having to say "take this seriously" tells you something about what was happening before.
Menopause and the missing data
We covered a version of this problem earlier this week. In the NIH All of Us dataset, far more women reported menopause in surveys than had it recorded in their electronic health records. When a major health transition is barely documented, it becomes harder to research, harder to audit and harder to treat well.
Missing records are not neutral. What is not written down cannot easily be counted, and what is not counted rarely gets funding or attention.
Where the gap comes from
Part of the explanation is historical. For a long time, much medical research was done mainly on men, and women's bodies were treated as a variation on a default. Conditions that mainly or only affect women, from endometriosis to menopause, have received less research attention than their impact would justify.
Part of it is cultural. Period pain, fatigue and mood changes are easy to dismiss as things women should simply manage. Part of it is structural: short appointments reward clear, single symptoms, while many women's health conditions present as messy clusters over time.
What helps, for now
None of this should be the patient's job to fix. But while the system catches up, a few things tend to make appointments more productive: a written symptom diary covering timing, severity and impact on daily life; a short list of your top concerns; asking directly what has been ruled out and what the next step is; and asking for your concern to be noted in your record.
If you are repeatedly told nothing is wrong and your symptoms continue, you are entitled to ask for a second opinion or referral.
Being believed should not be a skill patients have to develop. Until it is not, write everything down.
Reviewed for accuracy by WT Research Desk