Many of us know someone who's struggling with infertility, and it can be difficult to know exactly how to best support them, what to say and what to avoid. Tilly's co-founder Anna talked to Reader's Digest sharing her tips on how to be there for a friend. 

How can I help a friend with infertility?

Reader's Digest: How can I help a friend with infertility?

World Childless Week is 11-17th Sept 2023. This week was created by Stephanie Joy Phillips in 2017 to support and raise awareness of the childless not by choice community, and enable every childless person to share their story with confidence.

Tilly was founded by former fertility patients to support others going through fertility struggles. Being childless not by choice is a stigma and a life crisis that is rarely talked about openly. Tilly wants to be part of changing this and we applaud the World Childless Week initiative. Thank you World Childless Week for putting the spotlight on something that touches so many in our society. 

Thank you also to Resolve for highlighting this week and being part of breaking down the stigma.

Together we can support and raise awareness of a struggle that affects so many!

World Childless Week is 11-17th Sept 2023. This week was created by Stephanie Joy Phillips in 2017 to support and raise awareness of the childless not by choice (cnbc) community and enable every childless person to share his or her story with confidence.

Tilly is recognizing World Childless Week

1 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039035/

2 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336602/

3 - https://pubmed.ncbi.nlm.nih.gov/20967242/

Jenny Ann Johnson is the founder of Tilly. She’s spent a decade working on digital educational products prior to founding Tilly. After struggling with infertility and miscarriages for many years she finally found her path forward and is today blessed with four children. She is now creating the supportive and educational tools she herself was missing while going through fertility treatments.

Infertility comes as a shock to many, as do the mental health implications of the struggle. But when you think about it, it makes sense that a majority of fertility patients experience anxiety and depression, when having children is a life goal they are struggling to reach.

What is heartbreaking is that only 19% of fertility patients feel that their fertility clinic provides enough support when it comes to emotional challenges*

It’s 2023 - we believe it’s time to change this!

Fertility care has traditionally not focused on the emotional and mental struggles that the patient faces. Fortunately, patients are increasingly looking to get comprehensive whole-patient care, and mental health support is an important part of that. There are clinics that are very attentive to the mental health struggles of fertility issues - but sadly they are still too few. It’s understandable that even when clinics have the patients' best interest at heart, they struggle to give both medical and mental health support. However, seeing that there are numerous studies that show that digital therapy is an effective way to treat symptoms of anxiety and depression, there are cost-efficient alternatives to help support patients. This is what Tilly is made for. For fertility patients, by fertility patients (and backed by science and a team of psychologists and therapists of course). Tilly has tools and exercises based on well-proven frameworks like CBT and ACT, which we have tailored to the specific struggles of infertility.

When we look at how few patients feel they get the support they need from clinics, we believe it’s time to change this number - and we plan to follow-up on this on a yearly basis. We see that change is coming and are determined to be part of making it easy for fertility providers to give their patients the best whole-person support.

For a future with better fertility support!

Only 19% of fertility patients feel that their fertility clinic provides enough support when it comes to emotional challenges

81% feel that their fertility clinic does not give enough mental support

Maya Maria Brown, M.A., is an infertility mental health expert. She has a master’s in Counseling Psychology, and has worked with individuals and couples on infertility and relationships. She also has personal experience with infertility and is currently in treatment.

Many people with infertility also experience anxiety - find out why, and how to cope.

Anxiety is the most common mental illness in the world. Around 30% of adults experience anxiety during their lifetime.

Anxiety can be experienced in response to certain life experiences or circumstances, like during infertility, surrounding abuse, or after the loss of a loved one. But anxiety isn’t always related to an external stimulus. Generalized anxiety disorder, the most common form of anxiety, is the experience of anxiety in daily life without a specific or known cause.

According to the NIMH, “Anxiety disorders involve more than temporary worry or fear. For a person with an anxiety disorder, the anxiety does not go away and can get worse over time. The symptoms can interfere with daily activities such as job performance, school work, and relationships.”

Here are a few examples of what anxiety can feel like:

“Chronic anxiety is messy and unpredictable, overpowering and insidious, physical and mental, and at times so unexpectedly debilitating I’m unable to speak or think clearly or even move.” - Steve Barry

Anxiety is like when you’re playing a video game, and the evil boss’ music is playing so you know danger is nearby, but no threats actually appear.

“Living with anxiety - living alarmed - makes it impossible to enter the moment, to land inside my body and be there. I cannot be in the moment because I am too afraid of what the next moment will bring. I have to be ready.” - Glennon Doyle

Anxiety is like a revolving door of negative thoughts in your brain that never stops spinning, no matter how much you try to reassure yourself that everything is okay.

How to know if you’re experiencing anxiety

Anxiety can impact us physically and mentally. Sometimes the experience is so glaring and powerful that we can’t feel or think about anything else. But other times, anxiety can be sneaky, and we might not even realize we’re anxious until someone else points out to us that we’re experiencing symptoms like shaking, sweating or talking nonstop.

In order to cope with anxiety, we first need to be able to recognize it when you’re experiencing it.

Difficulty concentrating - mind going blank

Rumination, thinking about something negative over and over again

Sleep problems, e.g. difficulty falling or staying asleep, restlessness, or unsatisfying sleep

Depersonalization, dissociation or disconnected from self

One way to recognize if you’re experiencing anxiety is to do a body scan meditation. Put away distractions and focus on your breath as you breathe deeply into your belly. Bring your awareness to each part of your body, starting with your toes and ending with your head, and notice any sensations you feel.

If you’re experiencing anxiety, you might notice some physical symptoms or thoughts that are triggered by practicing mindfulness in this way.

Many people with infertility experience anxiety. Numerous studies show that “women with infertility report elevated levels of anxiety and depression.” Research suggests that up to 60% of infertile individuals report symptoms of anxiety and depression, and that their levels of anxiety and depression are significantly higher than in fertile controls.

One study on infertility and anxiety showed that “The prevalence of anxiety among the infertile group was higher compared with patients diagnosed with HIV-positive, cancer, heart diseases, or other serious, life-threatening chronic diseases.”

This means two things: first, that it’s common to experience anxiety when facing infertility and that you’re not alone. Second, that because people with infertility are at a higher risk for anxiety, it’s important to be mindful of your mental health and seek support.

When it comes to the causes of anxiety during infertility, there could be numerous factors:

One study found that 86.8% of the women with infertility surveyed were experiencing anxiety, and it was correlated to how long they had been experiencing infertility.

Fertility medications, like Lupron and Clomid, can have anxiety symptoms as side effects.

The stress of managing doctor’s appointments, tracking cycles and ovulation, taking medications, and timing intercourse can cause anxiety.

The life circumstances surrounding infertility, such as other people in your life conceiving easily, and the uncertainty of your future, can be anxiety-inducing.

6 tips for coping with anxiety related to infertility

Anxiety can be a debilitating mental health issue, so seeking support is crucial for your well-being. A mental health professional can provide the interventions needed to help you cope with your anxiety.

You don’t have to experience severe anxiety symptoms to reach out for help - even if you don’t think you’re experiencing anxiety, having mental health support during infertility can be immensely helpful.

Know that you’re not alone - reach out to others

As we’ve seen, it’s very common for people with infertility to experience anxiety. Talk to the people you know who understand infertility - people in your life, or in online forums like the Tilly community - to help you feel connected and less alone.

Social connection is an important part of our overall well-being, so reach out to people you love and trust to help you as you go through this difficult time.

Taking some moments to focus on your breath and return to the here and now can help calm anxious thoughts. If your anxiety is too high to allow you to sit still and be present in your body, you can also practice mindfulness while you go for a walk in nature, dance it out in your living room, or do something active like swimming.

Mindfulness is about learning to observe your thoughts without judgment. You don’t have to be perfectly zen or blank, you’re just noticing what’s going on in yourself, which is a great tool for managing anxiety.

Focus on something positive, creative or exciting

Focusing on something productive or engaging can help calm your anxiety. Try starting a new hobby, or returning to something you used to love doing. It can be something creative or intellectually stimulating, like knitting, watercolors, puzzles, or a musical instrument.

Not only will this help you focus on something other than anxiety, it can also be fun and support your well-being in general.

Cognitive restructuring, or finding new ways of thinking, can help you cope with anxiety. Tools like Cognitive Behavioral Therapy, loving kindness meditation, and positive affirmations can help you notice and change negative thought patterns.

When you find yourself stuck in an anxiety-induced negative thought spiral, try questioning your assumptions, finding alternative thoughts, or gathering evidence against the negative thoughts to help your mind break out of the cycle.

Remember that so many people with infertility experience anxiety. This isn’t a personal shortcoming, and there’s nothing wrong with you. Being kind to yourself is crucial for your ability to care for yourself and heal from this experience.

Give yourself treats throughout the day - this could be literal treats like chocolate, or symbolic treats like five minutes alone, an extra long bath, listening to your favorite song, or hugging someone you love. You deserve love, care and support.

Many people with infertility also experience anxiety - find out why, and how to cope

What are our options to have a child if we don’t have eggs, sperm and a uterus readily available?

When you and your partner or partners want to have a child, the path might not be straightforward if you don’t have eggs, sperm and a uterus readily available in your relationship.

Let’s look at what might be challenging and beautiful about growing your family as an LGBTQ+ couple or relationship, and what support can be helpful throughout the process.

“Social infertility” is a term that describes people who would like to have a baby, but face challenges due to their physiology and relationship. Basically, the relationship does not include the physiology needed to conceive and develop a pregnancy through to a live birth.

People who experience social infertility include two women in a relationship; two men in a relationship; and people in relationships in which one or both people are trans and do not have the reproductive physiology to create a child with sperm, egg and uterus.

Also relevant to this topic are people who are in a polyamorous relationship; even if there are eggs, sperm and a uterus present, it might not be obvious or simple to determine who will play which part in creating a child.

7 challenges that LGBTQ+ people might face when trying to have a baby

It’s important for all people to be aware of the challenges that people in an LGBTQ+ couple or relationship face when trying to have a baby.

Understanding the challenges can help the people themselves be more prepared, and can help those supporting them be able to show up for them in the ways that they need. There are also laws and policies that need to be changed, so the more people understand these challenges, the better chance we have at changing the rules so LGBTQ+ people can grow their families more easily.

Here are some of the challenges that LGBTQ+ people might face when trying to have a baby.

The often overwhelming costs associated with assisted reproductive technology are not unique to LGBTQ+ people, but unlike couples with a man and a woman, LGBTQ+ people are almost guaranteed to incur costs when trying to have a baby.

When all that is needed is sperm (for example, when two women are trying to have a child together), the costs could be kept low by using a known sperm donor and doing an at-home insemination - but that’s not always an option. And if no one in the relationship has eggs and/or a uterus, the costs of using an egg donor and/or surrogate can be incredibly high.

Some health insurance policies will only cover assisted reproductive technology for heterosexual couples. So, LGBTQ+ people might be blocked from health insurance coverage that heterosexual couples are able to receive.

Some medical professionals and fertility clinics require that a couple tries to get pregnant for one year before they are able to seek treatment. But if LGBTQ+ people in a relationship are not physically able to conceive unassisted, that time limit is simply wasted time.

Some clinics/countries do not offer double donation

Some people have someone in the relationship who has a uterus, but both donated sperm and donated eggs are needed to create an embryo to implant into the person with a uterus. While many clinics will work with donated eggs or donated sperm, some have limits where the other element (either the egg or the sperm) must come from someone in the relationship. This could be due to the clinic’s policies, or the laws of the country the clinic is in.

Some clinics/countries don’t work with LGBTQ+ people at all

Unfortunately, there are places in the world where the process to have a child as an LGBTQ+ couple or relationship is not possible. It might be in the country’s laws or the clinic’s policy that assisted reproductive technology is only available to men and women who are trying to conceive and have an infertility diagnosis. Adoption is also not available to LGBTQ+ people in some places.

Being misgendered by clinics and medical professionals

Many medical staff are not trained in inclusive language and practices. Trans and genderqueer people are frequently misgendered by the medical field, and this can be harmful and painful when it comes to fertility treatments.

For example, a medical professional might want to consider the options available to a couple in which one or both people are trans. It’s important that the people in the couple are spoken to using the pronouns and genders they identify as, while sensitively and respectfully discussing the possibilities available due to their ASAB (assigned sex at birth). Unfortunately these conversations are often approached without care or regard to a person’s identity.

Many states and countries have laws around parenthood that can pose challenges to LGBTQ+ people. In some places, a child’s birth certificate only has space for a mother and a father, and it must be the genetic parents’ names written on the birth certificate.

An example scenario is if two men are using an egg donor, one of the men’s sperm, and a surrogate to have a child. In some places, the man whose sperm is not used must legally adopt the child, rather than being the parent on the birth certificate and considered a father from the time of the child’s birth. The process of adopting your own child can be logically and psychologically challenging.

Not being genetically related to your child

Any person who has a child who is not genetically related to them - whether it’s through egg/sperm/embryo donation or adoption - might struggle with the situation. There might be feelings around your partner being genetically related to your child when you’re not, or the decision of whose DNA will be involved might have been a difficult one to make. While heterosexual couples might also face this challenge due to infertility, LGBTQ+ people are almost guaranteed to have this be part of their experience as a couple or relationship.

What can support LGBTQ+ people wanting to have a baby

As we’ve seen, LGBTQ+ people wanting to have a baby can face many challenges. Fortunately, there are many ways they can be supported through the process. Here is a list of things that LGBTQ+ people and the people who care about them can do to have support as they try to have a child.

Consider for yourself what it means to be a parent.

People who will not be genetically related to their child(ren) might have feelings about what it means to be a parent. As we explored in our article about egg donation, it can be helpful to consider what parenting is to you, beyond DNA. Passing on family and cultural traditions, life lessons, and love and support are things that you might consider to be beautiful aspects of parenthood that you can experience with or without a genetic connection.

Find supportive clinics and medical professionals.

It might take a few tries, but there are doctors who are sensitive and have great expertise when it comes to working with LGBTQ+ people. You deserve to work with people who understand your relationship and goals, and will do everything they can to help you have a baby. Hopefully, you won’t have to travel too far to find them, but it can be worth it to take your time to find the right clinic and doctor for you.

When it comes to the barriers to having children that are dictated by laws and policies, there might be things you can do to change them. This tip is especially aimed at people who support LGBTQ+ people having children, since the LGBTQ+ people themselves shouldn’t have to do this fight alone. We can all play a part in calling decision makers, educating clinics and medical professionals, and spreading the word about unfair and discriminatory policies.

Fertility treatments and choices can be overwhelming, and can be a lot to navigate on your own. Try the activity "Building your support network" in the Tilly app to help you, or take some time to consider who in your life can help you in this experience. It can be helpful to talk through difficult decisions with a friend, or have your family cook meals for you when you’re actively in treatment. And if you don’t feel you have people in your life who can show up for you in that way, you can find online support groups filled with people who understand what you’re going through.

Do you have a stressful doctor’s appointment coming up? This is a short meditation that you can do in the waiting room to help you prepare.

Lily Hardy is an accredited Yoga Teacher and certified Breathwork Facilitator that is passionate about empowering others to unlock a life they truly love and desire to wake up to everyday. After struggling with c-PTSD and debilitating anxiety for the majority of her life she discovered through therapy, meditation and breathwork that there was in fact another way to feel safe and content in your own skin.

Youtube video Waiting room meditation - prepare for a stressful appointment

Waiting room meditation - prepare for a stressful appointment

Helping you get the mental health support you need

Infertility can have a huge impact on our lives, including and especially on our mental health. With all the challenges, stressors, grief and decisions that come with infertility, having mental health support is crucial for your well-being.

When it comes to mental health professionals, it’s not one-size-fits-all. Not only are there lots of different approaches to working with you that therapists can use, but there’s also the question of who you feel safe and comfortable with.

It can take some time to find the right therapist for you. Many therapists offer a free phone consultation when you can ask them questions. Others will have you do a trial session to see if it’s a good fit.

These questions can help you figure out what is most important to you when looking for a therapist to help with infertility, and which therapist is the right fit for you.

7 questions to ask a mental health professional

There are all kinds of mental health professionals out there, and the professional associations and licenses can vary state to state, and country to country. Ideally, a therapist will have a background in psychology, and will be licensed in a way that enforces a code of ethics they have to abide by.

There are people who offer mental health support specifically for infertility that don’t have this formal training - it’s up to you if you’re comfortable working with someone who might understand exactly what you’re going through, even if they’re not trained or licensed. Regardless, getting to know their background can help you get a feel for how they work.

Do you have experience working with people going through infertility?

This might not be a requirement for you, but it can help to know if they have at least a baseline understanding of what people experiencing infertility go through. You probably already have to explain the ins and outs of treatment and your experience to the people in your life; it’d be nice to not have to cover the basics before you can dive into your emotional experience when talking with a therapist.

Infertility can already be an incredibly isolating experience, and feeling as though someone really understands what you’re going through can be a much-needed relief. You might want to find a therapist who you know will be able to meet you where you are when it comes to infertility.

How would you approach working with my struggles with infertility?

Some mental health professionals take an action-oriented or goal-oriented approach. This is especially true for coaches, who tend to focus on the future and how you can meet your goals. Cognitive-behavioral therapists tend to work on treating challenges that you’re experiencing day-to-day, with activities and systems to support your work. Therapists who have a psychodynamic or relational approach are more likely to work with you on deeper emotional experiences, with a less structured approach, allowing for a more fluid process.

For many people, infertility is a traumatic experience. It can be considered complex trauma, as the crisis extends over a long period of time and can have many impacts. So, working with a trauma therapist can be especially helpful for people with infertility.

How do you typically work with disenfranchised grief?

Going through infertility can involve feeling a lot of grief. There are so many losses you might experience, including pregnancy loss, the loss of a dream, the loss of the life you thought you’d live, and the loss of the person you once were. The grief surrounding these kinds of losses are sometimes called “disenfranchised grief,” referring to the fact that they’re often not considered losses in the traditional sense. People with infertility tend to have their grief invalidated and misunderstood by those around them.

It can be helpful to have support processing your grief with someone who can recognize these things as losses in need of grieving. Some mental health professionals might have techniques or ideas for working with grief that you really connect with, so it might be helpful to understand how they approach the subject.

Do you collaborate with other therapists?

You might already have a therapist you’ve been working with, and are looking for an additional professional to help you with infertility. In that case, it could be helpful if the two therapists communicated about your case so they could better support you. This would be done with a consent form that you sign, giving permission for the two therapists to discuss your case with one another.

You also might want to work with a couples therapist, if you don’t already. That’s another case where your different therapists sharing notes and insights with each other could benefit you. This of course isn’t a requirement, but can be helpful to think about.

Would you be able to follow certain steps with my clinic?

Some clinics require that you see a mental health professional before moving forward with a specific treatment, like using donated eggs, sperm or embryos. In that case, at some point you might need your therapist to sign a form, or follow a set of questions about your mental health, to meet your clinic’s requirements. It could be a good idea to ask your clinic what would be required so you can be more specific when you ask the therapist if they’re able to do what’s needed.

Do you follow a certain format or timeline?

Some mental health professionals might have specific timelines or techniques that they work with. If they work with health insurance providers, they will usually need to file reports to the insurance company and follow certain protocols. For example, they might have to follow a 10-session plan, or the insurance company might require the therapist to diagnose you with a mental illness (like depression, anxiety or PTSD) in order for the therapist to work with you.

Even without insurance companies, some therapists prefer to follow a plan that might have limited sessions, or work with a goal-based system in which your time together concludes when you reach those goals. Since infertility can be a long journey with many ups and downs, you might want to understand what limitations there would be when working with a certain therapist.

7 questions to ask your new therapist about working with infertility

Reader's Digest: How can I help a friend with infertility?

Read the article HERE

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