RFSL and RFSL Ungdom are receiving a lot of questions about diagnoses and diagnostic codes connected to gender dysphoria and gender-affirming care. In this FAQ we talk about the changes in ICD (International Statistical Classification of Diseases and Related Health Problems) and sort out what changes have been made up to date.
Gender dysphoria as a diagnosis
What does it look like today?
Today, there are different medical diagnoses used for gender dysphoria, i.e. the suffering that might arise when your assigned gender doesn’t match your gender identity. The diagnostic criteria for gender dysphoria in the upcoming ICD-11 (more about ICD-11 below) is gender incongruence of adolescence and adulthood or gender incongruence of childhood. In Sweden, a diagnosis of gender dysphoria is required in order to access the gender affirming care that is vital for many trans people. But it’s not the gender identity or being trans that is diagnosed, it’s the gender dysphoria. Not all trans people experience gender dysphoria.
The World Health Organisation (WHO) publishes an international classification tool, ICD (International Statistical Classification of Diseases and Related Health Problems). All diagnoses have a code in ICD, a so called diagnostic code, and are divided into different chapters. There is for example one chapter about coronary disease and another for mental disorders.
ICD-11 – a new diagnostic system
New publications of ICD are published regularly and updates are made every year. The new version is the eleventh version, hence the name ICD-11. ICD-11 was adopted during the 72nd World Health Assembly (WHA) taking place from 20 – 28 May 2019. The new version is not yet in use in Sweden but all countries must start using ICD-11 on January 1st 2022.
In the ICD-11, trans-related categories have been removed from the Chapter on Mental and Behavioural Disorders, which means that trans identities are formally de-psycho-pathologized. What used to be called “gender identity disorders” is now called “gender incongruence”, and is listed under a chapter on sexual health. Gender incongruence is described as a marked and persistent incongruence between an individual’s experienced gender and their assigned gender.
What is a diagnosis?
That healthcare makes a diagnosis means identifying and naming a condition, health risk, illness or injury that requires help from healthcare. A diagnosis also means that healthcare knows what kind of treatment is warranted for a certain condition. When a diagnosis is made decisions on treatment options are made. The diagnostic code is the code that, based on the diagnosis, is written in one’s medical records and is used for example for statistic purposes.
In order to identify some conditions that may warrant care, healthcare needs to make an assessment. In Sweden today, the assessment of gender dysphoria is made by psychiatry; a field that is competent in treating gender dysphoria (the treatment itself is often called trans healthcare, sex reassignment therapy, or gender affirming care). Today, the competency in performing assessments and diagnosing gender dysphoria lies only with specialist psychiatry, and it’s likely that gender affirming care will continue to be given there, at least for the foreseeable future.
The Swedish National Board of Health and Welfare is the authority that, among other things, issues licenses for healthcare staff in Sweden and evaluates and follows up how well healthcare functions. The Swedish National Board of Health and Welfare also publishes the Swedish version of ICD.
In 2015 the Swedish National Board of Health and Welfare published recommendations for the treatment of gender dysphoria in Sweden. The recommendations also state that a diagnosis doesn’t mean you have an illness. Rather, it’s an indication that there might be a need for care; for example that a person with a diagnosis of gender dysphoria is in need of some form of gender affirming care.
”In gender dysphoria the need for care depends on the suffering that arises due to an incongruence between the body and the gender identity ”, the Swedish National Board of Health and Welfare writes.
(Source: God vård av barn och ungdomar med könsdysfori: nationellt kunskapsstöd, Socialstyrelsen/the Swedish National Board of Health and Welfare, 2015, God vård av vuxna med könsdysfori: nationellt kunskapsstöd, Socialstyrelsen/the Swedish National Board of Health and Welfare, 2015)
Why do you need a diagnosis to get gender affirming care?
In Sweden many types of treatments in healthcare are based on diagnoses. One reason for this is that public healthcare in Sweden largely is funded by the state. If you are nationally registered in Sweden and are a care recipient, you only pay a small part of the costs for doctor’s visits, medications and surgery. This also applies to gender affirming care.
Other countries have different systems. It might be easier to access for example hormone treatments, but in return the care recipient may have to pay the entire cost. That makes trans healthcare an issue of private finances, and the access to the crucial care very unequal.
Many people wonder why gender dysphoria assessments often take a long time. That is because there’s a a great need for accuracy and quality assurance, not least to minimize the risk of malpractice. Malpractice leads to suffering for the care recipient and jeopardizes the confidence in healthcare’s treatment of gender dysphoria. The number of cases where care recipients in Sweden have regretted undergoing gender affirming care is very low, and the number has decreased over time. During the period 1960-2010 only 15 people, or 2,2 percent, have applied to have their legal gender changed back to the gender assigned at birth. (Source: God vård av vuxna med könsdysfori: nationellt kunskapsstöd, the Swedish National Board of Health and Welfare 2015, p. 13)
Since 2010, the Swedish trans health care has undergone a lot of changes. The already mentioned national recommendations from the National Board of Health and Welfare is one example.
Gender dysphoria assessments is not about reaching a conclusion about a person’s gender identity. Instead, the assessment is about figuring out the need for healthcare and determining if gender affirming care is relevant for the person’s needs and health.
What does RFSL and RFSL Ungdom think?
RFSL and RFSL Ungdom believe that that diagnoses are needed to secure the access to state financed care. The gender dysphoria diagnoses also need to be modelled in a way that makes it possible for everybody who needs care to get it.
Who can I talk to if I have more questions?
Questions and thoughts regarding trans can be sent to RFSL’s and RFSL Ungdom’s support mail: email@example.com. You can contact the support mail regardless of age or you’re a trans person; you might be questioning your gender identity, maybe you’re the relative of a trans person or a professional who meets trans people in your work. You can remain anonymous if you want to. The mail is answered by people who work with trans issues at RFSL and RFSL Ungdom.
You can also contact the Swedish National Board of Health and Welfare for more information about their work: