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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.

Overview of crisis numbers

The button below will take you directly to a list of international helplines, websites and other contact information you can contact when you need help with problems you cannot solve yourself.

Helpline numbers

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.

Information is key

Maybe you only recently discovered you are intersex and you’re still coming to terms with all this new information. Something that could help you is reading more about intersex, the community and the experiences of others. Know that you are not alone and that there are plenty of intersex communities (worldwide!) out there. People in these communities may have similar experiences or feel the same way. Be sure to inform yourself on intersex variations and the common experiences of intersex people and where the issues lie when it comes to intersex human rights. Once you feel more comfortable, you might want to meet other intersex people. Be sure to check out the pages 10 answers to questions about intersex, Introducing sex diversity, Intersex people tell their story.

Support or contact groups

You are not alone; 8.24 million people in Europe (1 in 90 people) are born with a body that does not quite match the standard of male or female. To get in touch with other people, you can join a support or contact group. In this way, you can exchange experiences in a safe environment and hear how others deal with sex diversity. Read more on intersex inclusive groups here.

Professional help

Professional help is offered by psychologists, social workers, and physicians. If you have experienced trauma, it is essential for your mental health not to ignore these issues, but to get help when needed. Don’t let embarrassment or guilt hold you back from investing time in your mental health, because this is extremely important for your happiness in life. Hence, many intersex people (and people in general!) sometimes talk to a professional to work through some issues. Psychologists may work from their own practice but sometimes also at mental health institutions or even hospitals. Many people who have had negative experiences in healthcare, such as human rights violations by unnecessary medical interventions that were performed without their consent when they were young, often do not have any contact or limit their contact with (mental) healthcare. They find it difficult to re-establish that contact for various – completely valid – reasons, even though (mental) healthcare is sometimes necessary.

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).

Medical support

Most intersex people who went through treatment in childhood are no longer in contact with doctors. This is called ‘lost to follow-up’. Doctors think this is because of the transition from pediatric to adult care, while intersex groups suspect many people do not have pleasant memories of the treatment provided and have therefore cut off contact. Treatment centres are doing their best to get back in touch with the lost to follow-up patients. If you struggle with past treatments you’ve had, know that psychosocial and psychological support may be a solution for you.

If you do not want to go to a DSD treatment center, you can also consult your local general practitioner. The GP can refer you to a medical specialist in a hospital. Specialised healthcare teams that can help intersex people work in gynaecology, urology, and endocrinology.1Of course you can also consult your general practitioner for psychological support. Also check out the Psychological support bit on this page.

Check-ups

A common reason for intersex people to be in touch with specialized doctors is for check-ups. Some people go about once a year to discuss medication, or check bone density, for instance. Others may only go for a check-up after years or decades of no contact. They may experience health issues, but do not know if those are related to their form of sex diversity or if they have a different cause. If you have not been to a specialist in a long time, it is good to ask for new treatment insights. Perhaps there are new, better-working medications, or maybe your usual prescription needs to be reevaluated. The most important part is to ask yourself beforehand what you would like to achieve with your check-up appointment. This way, you can ensure that the things you find most important are discussed.

Fatigue

Fatigue and lack of energy are common complaints with almost all intersex variations.

Medications

Many intersex people require lifelong medication. Often this is to regulate sex hormone levels, but adrenal hormones may also be necessary. If you stop taking these medications, it can lead to serious health problems.

Elective surgery

Surgery may appear controversial in the context of intersex variations. However, the intersex community only opposes unnecessary surgical intervention without the consent of the patient. In some cases they were too young, experienced pressure or coercion, or were not freely and fully informed. The right to self-determination includes the right to choose to undergo surgery.

Surgery that is physically unnecessary for children may become psychologically needed or desired later in life. Physical discomfort may need to be addressed, including pain caused by medical intervention earlier in life. It may be challenging to find a specialist that you feel comfortable with that has the skills that your surgery requires. Members of national or local communities may have advice based on their own experiences.

Fertility treatment

Many intersex people experience fertility issues, and this can be painful for them. Some are fertile and won’t face problems conceiving. Others are born infertile or with limited fertility. This last group may also become infertile early in life. For this group, there may be options to preserve that fertility through medical assistance, or they may be able to reproduce with medical help. Some intersex people can be assisted in having biological children through Testicular Sperm Extraction (TESE) or Egg Retrieval and In Vitro Fertilisation (IVF), potentially with the help of a surrogate. Sometimes the sperm or the eggs are used immediately, but they can also be cryogenically preserved. Sadly, this is not an option for everyone, but it can be worth discussing your options with a specialist.

The resources described in the section on psychological support may be helpful to you if you are experiencing psychological pain because you are sterile or infertile.

Bone Density

A lack of natural hormones can lead to osteoporosis. Your bone mineral density can be determined through a Dual-energy X-ray absorptiometry (DXA/DEXA) scan.

List of specialized treatment centers

Psychological support

Because the diversity of sex is not well known in society, reactions to intersex are not always kind. Rejection, stigma, and discrimination can lead to trauma. These can manifest in the form of psychological problems such as depression or post traumatic stress disorder (PTSD). But traumas can also lead to social problems.2When psychological problems go hand in hand with social problems, they are called psychosocial problems. A social worker can assist with resolving psychosocial problems Support from a therapist can then provide relief.

Options

There are several options to consider. For more mild issues, self-help resources in books, online or (free) apps may be sufficient. Some hospitals offer psychological support through DSD teams, with psychologists who know more about specific DSD diagnoses. However, you may prefer to find support that is available locally, or that is not linked to the medical treatment you are undergoing, or have undergone as a child, especially if your struggles are related to that treatment. Additionally, psychological support professionals working outside of DSD teams may have specialized more in the issues you are dealing with. However, unfortunately, these practitioners will often not yet have specific knowledge about problems related to intersex variations. You will have to explain things to them yourself, or you can refer mental health professionals to this website, or information available in your own language through intersex communities. More and more support can also be found online if you cannot find the support you want and need in your area. When looking for psychological support, it is especially important that you can work with someone that you feel comfortable around. Depending on your location, there may be waiting lists, however, it is often possible to have a (paid) introductory conversation to see if you connect well with a provider before you commit to a waiting list.

Support to access support

Depending on your location, you may need a referral from your general practioner (GP) to access mental and/or social health support. In some countries, general practitioners also provide in-house support through psychologists or social workers that are associated with the same health centre. If needed, this can help bridge the gap to access more specialized support. In some cases, company physicians can also assist in finding the support you need.

Psychosocial support

If psychological problems3For example, very gloomy thoughts that just won’t go away, feeling anxious for no apparent reason, feeling that everyone has abandoned you, or often being angry at others for no good reason go hand in hand with social problems4difficulties with your family, relatives, colleagues, store staff, and the newspaper delivery guy or with authorities such as the energy supplier, the municipality, and the tax authority, these are called psychosocial problems. The available help ranges from online self-help to counseling by social workers. There is a great deal of overlap with the options described under the heading Psychological help.

A sympathetic ear

Sometimes it helps if you can talk to someone. This support can sometimes be found online or through (volunteer run) telephone lines where you can express the issues you are dealing with. You will probably not find specific knowledge on intersex or awareness about sex diversity, but having a good conversation with someone who won’t judge you, and who you do not even know can provide relief. If it is an option, friends can also be great supporters.

Intersex community organizations and patient support organizations

Peer support consists of helping each other by offering social and practical assistance, and sharing knowledge and experience. There are intersex communities and patient support groups throughout the world. Finding people who may have similar experiences can help, for instance with feeling misunderstood and isolated. If one is not available in your country, there may be regional options or groups in neighboring countries where you can find others like you.

List of intersex (inclusive) organizations

Social work

A social worker provides support with functioning in society.

Unpleasant feelings or bad experiences from the past can affect how you function in society. As a result, you may experience practical problems related to income, or at work, with education, and even with people you love. Social workers can support you with solving these kinds of problems. You can get personal support, but sometimes also in a group of people who have the same questions or issues.

A social worker can offer help with a wide range of problems. These range from relationship problems, grief counseling, and questions about sexuality to problems at work (or school), domestic violence, and money problems. If necessary, a social worker can refer you to more specialized help, such as a psychologist.

Social work can be provided by the municipality where you live, for example through a district team, youth services or the Social Support Office. General practitioners (GP) and medical specialists can also refer you to medical social work. Social workers who specialize in psychosocial problems related to illness, treatment and hospitalization work in this area.

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.

Your input

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.

Second opinion

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.

References