LGBTQI, eating disorders and pregnancy

Mental health conditions and eating disorders in LGBTQI individuals

As teenagers, we often have thoughts about sexuality, gender, identity, the body and our relationship with it. Society’s norms about how you should look to fit in are very narrow, and we are given plenty of advice about how we can adapt to these standards through diet and exercise. These norms affect some people more than others, and LGBTQI people have an increased risk of mental health conditions and eating disorders. A complicated relationship with one’s body and food is more common among LGBTQI people than among heterosexual cis-people. People with gender dysphoria may have an even more complicated relationship with their bodies. In a transgender person, gender dysphoria can be triggered by the changes the body goes through in puberty. We also know that LGBTQI people often hesitate to seek healthcare, for example, because of minority stress, which means that their need for support isn’t always met.

People who have had an eating disorder in their teens have an increased risk of other forms of mental health conditions as young adults (anxiety, depression and self-harm) and therefore it’s important to get help and support to lower this risk.

The fact that you’ve never been diagnosed doesn’t mean you haven’t had an eating disorder. People who have lived with an eating disorder testify how easy it is to hide the fact that you’re not eating, that you compensate by purging after meals or that you binge or over-eat. Before, eating disorders were split into three categories: anorexia nervosa, bulimia nervosa and eating disorders not otherwise specified (EDNOS). In the new diagnostic system DSM 5, they have included further sub-categories – over-eating and bingeing without compensatory behaviours – in order to allow for a more specific diagnosis and treatment.

The risks associated with of eating disorders during/before pregnancy

Eating disorders are among the more serious psychiatric illnesses and the risks vary depending on what eating disorder you suffer from and what your compensatory behaviours are. People who binge-eat and purge, and people who starve themselves, can develop serious heart problems due to an electrolyte imbalance in the body and because being seriously underweight is stressful for the heart. The stress on the body from being pregnant can, in combination with self-starvation and/or vomiting, be a great risk both to the pregnant person and the child.

A person who is significantly underweight and starves themselves doesn’t menstruate, or have irregular periods, and may struggle with getting pregnant. This also applies to people who exercise compulsively or people who binge and purge.

People with a history of over-eating or bingeing without compensatory behaviours can be triggered during pregnancy and think: “Now that I’m pregnant I can eat whatever I want, I’m going to gain weight anyways.” Over-eating and bingeing is often connected to how someone deals with their feelings and anxiety. It may be helpful to talk to a professional about other ways of dealing with anxiety.  

At the midwife’s

When you first meet your midwife (when you are pregnant) you will be asked if you, at some point in your life, have had a period where you’ve struggled with your mental health. How that question is formulated probably varies depending on who you meet, but it also includes your relationship with your body, food or exercise in order to understand what support you might need during pregnancy. The midwife’s role is to make sure that your and the child’s health is as good as possible. That includes looking for different risk factors such as quick weight gain, no weight gain or weight loss. There are different risks connected to the different scenarios. An uncontrollable weight gain can increase the risk of gestational diabetes and high blood pressure, or it may be the result of swelling in the body connected to pre-eclampsia. Weight loss may cause growth inhibition in the child. Therefore, the midwife wants to monitor your weight. As a patient, you can ask the midwife not to disclose your weight if you think that it might trigger you. You can stand with your back to the display so that you don’t have to see the number.

The body changes during pregnancy and that may be more difficult for someone who has a complicated relationship with their body. Some think that the healthcare system focuses too much on weight, which can trigger an eating disorder. People who have had an eating disorder often relapse or have thoughts about food and exercise even after treatment. Pregnant trans people also have an increased risk of feeling worse mentally because of the bodily changes during that period.

Changes in the body during pregnancy

Here are some examples of what happens in the body during pregnancy so you can be mentally prepared. If it’s difficult for you to read about this you can either skip this section or see it as a sign that you might need extra support during pregnancy. Some people who have been pregnant say that anxiety connected to the body’s appearance increased, while others felt that it decreased as it was clear that the body did what it needed to let a child grow and be healthy.

• The hormones connected to pregnancy prepares you for giving the child the best preconditions of developing into a healthy child.
• The uterus is the fantastic organ where your child grows from being just a few cells to becoming a small human being. The uterus creates a placenta which provides the nourishment and oxygen the child needs to develop normally through the umbilical cord.
• The weight of new-born babies carried to term varies. Often, genetics affect the baby’s size, but also the pregnant person’s lifestyle and how the pregnancy has been.
• The baby grows within the uterus and you can tell by your stomach that the baby is growing. In order to make sure that the baby is following its growth curve the midwife measures the stomach from the pelvic bone to the top of the uterus during pregnancy. It is done to find out if the baby’s growth is stunted, or if it’s growing more than expected, which would need to be examined further. If the pregnant person has diabetes, the baby’s growth is followed by ultrasound as the baby risks growing more than average because of fluctuating blood sugar and insulin levels.
• The uterus is the organ that enables the birth of the baby. It contracts when you have a contraction and, with your help, delivers the baby.
• Pregnancy hormones also affect the body by softening the pubic bone so that it’s easier for the baby to pass through the birth canal. The hormones also make the breast tissue swell and start the production of colostrum, the first milk the baby gets when breastfeeding. The breast tissue is prepared to give the baby nutrition during its first time in life. The hormones also make the body change so that you will accumulate fat around your hips or thighs.
• During pregnancy it’s also common to accumulate more fluid in the body which can make you feel swollen and bloated. That’s normal and has nothing to do with what you’ve eaten. If your legs are swollen you can buy support stockings to wear during the day and keep your feet elevated if you need to rest. If you feel bloated and experience pain or if you have mobility problems, talk to the midwife as it could be a sign of preeclampsia.

Diet and exercise during pregnancy

All the changes the body goes through is to make the pregnancy as healthy as possible. You can live more or less as you did before the pregnancy, but you should follow the Swedish Food Agency’s (Livsmedelsverket’s) recommendations about foods and alcohol. If it triggers you to find out what you should avoid eating you can ask your partner, a family member or a friend to read the dietary advice and then tell you, in their own words.

You can keep exercising as before pregnancy but you may need to listen to your body and be kind to yourself if you can’t be as active as before. Some recommend that you avoid heavy lifting during pregnancy and it’s really all about what level of physical activity your body is used to from before. Listen to your midwife/physician and follow their advice.

If you start having thoughts about your body and food

For some, the bodily changes can trigger thoughts you haven’t had since you struggled with an eating disorder earlier in life. Try identifying the thoughts when they come. Can you handle them by yourself or ignore them, or do you need help dealing with them? Is there a risk you might stop eating, start purging, using laxatives, bingeing, over-eating or exercising excessively? Is your mood affected to the extent that you get depressed and get impulses to harm yourself, or do you have thoughts about wanting to die?

Get help! Talk to someone you have confidence in about your thoughts. For some, it’s a close friend, partner or family member while others prefer to talk to healthcare staff. It’s good if you can also talk to your midwife. They can help by making an appointment with a doctor, help you with a referral to a counsellor, psychologist, psychotherapist or an eating disorder clinic. There are different treatment options for people with eating disorders and at the end of this text, there are links to pages where you can read more about the treatment of eating disorders.

Is someone close to you pregnant and might have an eating disorder?

Tell the person that you’re concerned, both for their sake, but also for the baby’s. Don’t confront them, be gentle. Some people might respond better to straight and clear communication, you know the person best. Offer to help them seek care and be there for them. Some people with eating disorders have a hard time accepting they need help and may get defensive and try to pull away from you. Stay. If the person seems to be a danger to themselves you can contact 1177 for advice, if it’s an emergency, call 112. A person with severe anxiety or depressive symptoms caused by starvation may need inpatient care and medication to feel better. It can be hard to act when someone needs urgent help. They might be accusatory towards you, but in the long run you show that you care by seeking help. Further down on this page there are links to support for friends and family and additional information that might help.

Are you a healthcare worker who suspects that a patient has an eating disorder?

A person with an eating disorder may suffer from underlying minority stress which keeps them from seeking care for their eating disorder. For some, controlling one’s diet and exercise is a way of dealing with minority stress, and it’s good for you as a healthcare worker to be aware of that.

Don’t forget, a person doesn’t have to be underweight to have an eating disorder, people who are overweight may also suffer from an eating disorder! Eating disorders in overweight people are probably very common, and they usually haven’t gone through treatment for their eating disorder. Therefore, it’s important to be delicate about how you talk about diet and exercise during pregnancy.

To point out someone’s weight, whether it’s high or low, might be extremely triggering for a person with an eating disorder. If a patient needs fertility treatment they might be told that they need to lose weight to reach the BMI required by Swedish healthcare. 

People with an ongoing or previous eating disorder can also be triggered by having to weigh themselves during pregnancy, and here you can give the patient a couple of options. First, explain why you want them to weigh themselves. If you can’t justify a weigh-in it may be a good idea to consider if this is the right time for that. If you notice that it’s triggering to talk about weight and diet it’s good to encourage the patient to only weigh in with you and avoid the scale at home. At a weigh-in, you can also offer the patient the opportunity to turn their back to the display so that they don’t have to see the numbers.

Write comments in the records under the keyword “nutrition” or “psychosocial” when you talk to the patient about their eating disorder and log what might trigger the person so that other healthcare workers are aware that there’s an issue. BMI can be problematic and not the most accurate tool to use. Sometimes you don’t need to talk about it in front of the patient. It’s in the records. If the person is overweight, they already know that they have a high BMI without having to be reminded by you.

Ask straightforward and direct questions. Don’t tiptoe around the issue. If you as a healthcare worker dare to speak about eating disorders and show that you can handle the answers you get, the person might feel safe talking to you.

Tips: 

• Ask directly: Have you at some point in your life had a complicated relationship to food, weight, exercise and your own body. If the person answers yes, ask: Have you ever sought help for this? Did you get a diagnosis? Have you undergone treatment? How do you feel today? Are you worried about your pregnancy because of your previous/current issues? Do you have a counsellor, or do you think you need one?
• Ask how the eating disorder manifested itself (purging/laxation/starvation/binge eating/over-eating/excessive physical activity). Based on that you can also ask if it’s something the patient is currently doing and follow up during pregnancy. Some people who suffer from hyperemesis during pregnancy can be triggered if they’ve had an eating disorder with compensatory purging.
• If the patient wants help and support it’s best to make an appointment with a doctor at the centre or a doctor at a specialist maternity centre to, in agreement with the patient, decide what the next step should be.
• You can send a referral to a midwife counsellor, but they don’t necessarily have experience in working with people with eating disorders.
• If you have a counsellor or psychologist connected to the clinic, offer your patient to contact them.
• Ask if the patient thinks that they would benefit from seeing a dietician to talk more about why it’s important not to let the eating disorder take over.
• A physiotherapist can be useful in helping the patient limit their activity if there’s a risk for over-training, or change to a less strenuous workout program.

If the patient wants external contact with someone who has experience in eating disorders it’s possible to contact the nearest clinic for people with eating disorders. See below to find the right care:

Knowledge centre for eating disorders:

http://www.atstorning.se/ 

1177.se:  

https://www.1177.se/Stockholm/sjukdomar–besvar/psykiska-sjukdomar-och-besvar/atstorningar/atstorningar/

http://www.atstorning.se/om-atstorningar/graviditet-och-atstorning/vart-kan-jag-vanda-mig/

For family and friends of a person with an eating disorder: https://www.1177.se/Stockholm/sjukdomar–besvar/psykiska-sjukdomar-och-besvar/atstorningar/att-vara-narstaende-till-nagon-som-har-en-atstorning/ 

https://www.friskfri.se/

For healthcare staff who want to learn more about eating disorders:

http://www.atstorning.se/utbildning/winst-webbutbildning/bast/

http://www.atstorning.se/om-atstorningar/graviditet-och-atstorning/ar-det-farligt-for-fostret/

http://www.atstorning.se/om-atstorningar/graviditet-och-atstorning/hur-paverkas-ett-nyfott-barn/ 

http://www.atstorning.se/om-atstorningar/graviditet-och-atstorning/hur-paverkas-mamma-och-familjen/

The text is written by Therese Sandin who works as a midwife in RFSL’s project Rainbow families in waiting, and has previous experience in working with the treatment of people with eating disorders.