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Where can I find support?
Intersex people can experience different types of problems due to trauma and discrimination. This is because society still has little awareness of the diverse spectrum that is biological sex. Even health professionals and social workers often do not know about sex diversity. On this page, you can read what you can do if you are looking for help with psychological, psychosocial and medical problems that are directly or indirectly related to being intersex or experiencing certain things because you are intersex.
Support that suits your needs
If you’ve found this page, chances are you’re looking for help for yourself or someone else. Of course, there is no ‘standard’ that works equally well for everyone. Therefore, you will not find a ready-made answer on this page. However, you can read how to find help that suits your needs. Because there are so many different options, the help options are divided below into informing yourself, help within communities, and professional help. This may mean that some information does not apply to you.
What kind of support would be suitable?
Help can take many forms, and not every form is right for you. The table below will give you a rough idea of what type of help is appropriate for several situations:
- If you…
- Be sure to…
- …have questions about your body or past treatments
- …read more on Medical support.
- …suffer from unpleasant feelings or bad experiences from the past
- …read more on Psychological support.
- …notice that you are quickly tense or argue with others for no real reason
- …read more on Psychosocial support.
But it is unlikely that your body and your mind work entirely independently of each other; if your body has problems, your mind will suffer. And vice versa, of course. For this reason, the various types of support or help might take place somewhat simultaneously (by seeing both a mental health worker and a medical professional, for example).
Between a rock and a hard place
The gender identity of an intersex child may not match the assigned biological sex. This happens more often than with people who are not intersex. Recent research shows that the gender registration of five percent of intersex people has changed, mostly before puberty (Falhammar 2018). This is because it is impossible to predict future gender identity with 100% certainty, even for specialists. Health professionals often confuse intersex children’s rejection of their assigned gender with gender dysphoria, but in reality the problem lies with incorrect gender assignment. Intersex organizations want every intersex child to socially – and not medically – be assigned a gender of man or woman in line with the best possible prediction, and for it to be as easy as possible to later change that gender to male, female, or unregistered. (Malta 2013)
Intersex people who have rejected the originally assigned gender sometimes find themselves between a rock and a hard place: transgender groups, intersex communities and DSD patient groups are often unable to fully support them as their experiences differ from members in the rest of the group.
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.5That, however, does not mean that your specific diagnose causes the problems you experience in society.
Tell your medical practitioner immediately if you think sex diversity6If you prefer, you can replace ‘sex diversity’ with intersex variation, DSD or the name of a specific diagnosis, such as AIS, AGS, MRKH, Klinefelter syndrome, Turner syndrome, Triple X, hypospadias, et cetera, in this context. 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.7You will usually need a referral from your primary physician. Depending on what country you live in, you might need to get the second opinion from a doctor who has a contract with your insurance company. You can ask your insurance provider how everything works in your country. They will likely have people working for them who can answer all your questions.
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 If you really don’t get along with your primary physician, you can request a referral with your GP or your insurance. 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?
What do other people do…
When you’re feeling down, it’s good to realize other intersex people have been through the same thing. Every situation is different, but we asked some people what they did when they were feeling down. Their tips might not solve all your problems, but sometimes they can help.
- If the first person you tell your story to can’t help you, find someone else. Don’t get discouraged. Keep going!
- If you’re on medication, make sure you take them on time. Never stop using medication without talking to a doctor first.
- Alcohol and drugs are never a solution to your problems. They just create more problems.
- Make a list of things you can do to keep yourself distracted, like listening to beautiful music, calling a friend or watching Netflix. When you’re feeling bad, choose something to do from the list.
- Keep things that are important to you close and look at them or use them when you are feeling bad. Look at pictures, keep your friends’ phone numbers close, smell your favorite perfume, listen to a playlist of your favorite music, read your favorite cookbook… Do anything that keeps you distracted.
- Make sure you keep a good balance between sleeping, resting, exercising and working. Eat at set times.
- Write a long letter or email to a friend or to a past doctor, without sending it. Writing in a diary works too.
- Try to find out how other people deal with similar situations and learn from them.
- Stay in touch with people you can share your experiences with. Don’t disappear as soon as you feel better, because you might one day need these people again, and of course it’s always good if others can also share their experiences with you.
- Don’t ignore your body. Go for a walk, exercise, do some yoga, go for a weekly swim, get a massage. Do something that keeps you in touch with your body.
- Pick a new hobby. Sing, try photography, draw, sculpt, dance – do something creative.
- Take your time. After all, Rome wasn’t built in a day.
If you can’t manage to keep yourself distracted in a healthy way, don’t hesitate to ask others for help.