Do these people have the right knowledge?
With the exception of at specialized medical centers, most health professionals and social workers will probably not know exactly what sex diversity is and what kind of problems it can cause. That does not mean that they can’t help you with the problems you experience and your traumas. You just may have to explain the concept of sex diversity every time you speak to someone new. You will also have to explain why you feel the problems you’re going through have to to with your specific intersex variation. With regards to physical issues, simply stating your diagnosis will often be enough. Their is little specific research into sex diversity and the mental health problems that might spring from it. What little research there is, does seem to suggest there is a connection.5
Tell your medical practitioner immediately if you think sex diversity6 is the cause of your medical, mental or psychosocial problems. Be as clear as possibele and provide your practitioner with as much information about sex diversity as possible. The problems you are experiencing might be symptoms of a bigger issue. A good sentence to start with is: ‘I was born with (intersex variation) and lately I have been feeling…’ or ‘I was born with an intersex variation and I have been thinking about that a lot because…’.
The person you are talking to might not immediately react the way you were hoping. A lot of people don’t know what sex diversity is and confuse it with gender identity, or they get diagnoses like AIS and AGS confused. You can refer them to information on the internet, like this website, if necessary. Bringing a brochure about sex diversity, intersex variations, DSD or your specific diagnosis can also be helpful. Of course, you can always bring a family member or someone else you trust to support you.
If you’re not sure that you’re being offered the right kind of treatment or help, you can always ask for a second opinion. This means another doctor will look at the results of any tests you underwent, and at the contents of conversations you had with your first doctor. They won’t do the tests again. You can ask for a second opinion with regards to medical treatment, but also any other treatment you might be undergoing, like psychotherapy, fysiotherapy and other kinds of therapy.
Everyone with medical insurance is entitled to a second opinion.7
Also tell your current doctor you might want a second opinion. Maybe they can explain why they said the things they said. You don’t have to be afraid they will be angry if you ask for a second opinion. They understand that you might want to know what other doctors think before you undergo major surgery or another kind of medical treatment.8 Getting a second opinion is not the same thing as switching doctors. Your primary doctor will still be responsible for your treatment.
Finding that both doctors agree can be comforting. If the doctor you asked for a second opinion comes to a different conclusion than the first, you will have to make a difficult choice:
- stay with your primary physician and discuss the second opinion together,
- switch to the doctor who gave you the second opinion, or
- switch to different doctor altogether.
Friends and family members can help you make this decision, but people who have been through the same thing (like people you know from a patient organization or a contact group) can also be very helpful. You can also think about what it most important to you:
- Which doctor or team do you trust the most?
- Which doctor or team has the most experience?
- Do the doctors use the same or comparable (surgical) techniques? If not, what does that mean for the outcome of your treatment?
- What treatment outcome do you need to make you happy, both now and in the future?
- What treatment seems the most radical to you?
- Which choice offers you the most support?
- Do you have to travel far for your treatment, and is that a problem for you (and your family)? Remember that you may also have to go back for check-ups.
- Does your health insurance cover the cost of the treatment?
- Do you have to wait before you can receive treatment?