What is disenfranchised grief?

Learn about the invisible losses that come with infertility

Grief is something that most of us experience at some point in our lives. We typically think of grief as being related to someone’s death.

Many cultures have rituals and ceremonies to honor the grief we feel when someone we love passes away - things like funerals, visiting gravestones, festivals like “Día de los Muertos” in Mexican culture, or sitting “shiva” in Jewish culture.

These rituals can be instrumental in our healing processes, allowing us to move forward with our lives. Research shows that “using rituals, whether the formal rituals associated with many religions or the informal rituals we can create for ourselves, can help people regain some feeling of control in their lives as well as cope with loss.”

The grief we feel when someone passes away is typically accepted and understood by those around us. But there are many losses we face in life that are not considered losses, or at least are not acknowledged as worthy of a grieving process. The losses that come with infertility fall into this category. The grief we feel from these invisible losses is called “disenfranchised grief.”

What does “disenfranchised grief” mean?

Disenfranchised grief is grief that isn’t acknowledged by yourself or others. This is perhaps because the grief is not understood, the loss is not considered significant enough to warrant grief, the loss is not thought of as being a loss at all.

The truth is, we experience many losses in life that can be considered invisible losses. Examples of invisible losses include:

• Pregnancy loss and miscarriages
• The loss of a dream or identity
• The end of a friendship
• Estrangement with a loved one due to addiction or mental health issues
• The loss of a job
• The end of a meaningful experience
• The loss of belongings, through something like a fire or misplaced item

Because we associate grief and grieving with things like death and funerals, we often don’t consider that we could also grieve these other kinds of losses.

Many invisible losses are hard to acknowledge even to ourselves because there is stigma associated with them. If we are feeling ashamed about our infertility, or embarrassed about losing our job, it will be harder to recognize that we have grief we need to process.

We also might choose to hide these losses from those around us, isolating us even more in our grief.

What are the invisible losses with infertility?

Infertility has many facets. Between doctor’s appointments, treatment cycles, the physical and emotional tolls, medications, social impacts and everything else you’re dealing with, the losses that you experience might go unacknowledged.

But for many of us, there are a lot of losses that come with infertility. And with them comes a lot of grief. When we keep the grief inside, and don’t process it with rituals or share it with others and get support, it can weigh heavily on us - without us even realizing it. Let’s look at some of the losses we might experience when going through infertility.

Miscarriages and pregnancy loss

Perhaps the most tangible loss that can come with infertility is miscarriages and pregnancy loss. There was an embryo or ongoing pregnancy that we had, and now we don’t.

Even though this is one of the losses related to infertility that the general population has an easier time understanding conceptually, grieving a pregnancy loss can still be an incredibly isolating experience.

You might be expected to “move on” more quickly than you’re prepared to. Or, your loss isn’t fully understood - but just because there wasn’t a live birth before the loss doesn’t mean you didn’t envision and feel a whole life with what you thought would be your child.

The loss of the life you thought you’d have

How many of us had clearly thought-out timelines of how our life would go? Maybe it’s just those of us with Type A personalities. But many people do have an idea that you’d have your first child by the time you’re 28, or that you’d be married for 1 year before you started having children.

Maybe you bought a house with a couple of extra bedrooms, ready to fill them with cribs and toy chests. Or you have stayed in a job you didn’t love because it has great parental benefits you’re expecting to get to use. You might have had visions of being a “young” parent, or having children before your parents got too old to run around with them.

Infertility teaches us the hard way that we are not nearly as in control of our lives as we thought. There can be a great deal of loss around the life we thought we would be living at this point, which can make the life we are living feel gray and distant.

The life you lived before

Many people with infertility feel that the experience has changed them. You might find yourself a more bitter and cynical version of yourself these days, or filled with more envy and jealousy towards people with kids than you thought was possible.

Especially when paired with depression, infertility can take away the joy we used to feel with certain people and activities. It can be hard to have the motivation or energy to do things we used to do, or maintain the friendships and relationships we used to invest in regularly.

We can feel a lot of grief around the loss of who we once were, feeling that infertility has taken so much from us that we don’t recognize ourselves anymore.

Friendships and other relationships

It is common for some friendships to slip away when we experience infertility. In some cases, friends pull away from us because they don’t understand our pain. With others, we retreat from our friends who have children because they’re in a life stage we feel we don’t have access to.

Some people might not respect the experience of infertility, making insulting comments or asking inappropriate questions - so we understandably choose to not see that person anymore. Or, we might simply not have the ability to maintain friendships because all our energy is going into getting through the next day/cycle/treatment/disappointment.

On top of all the losses you’re already experiencing with infertility, the loss of friendships or relationships can compound the grief, leaving you more alone and less supported than before.

Your relationship with yourself and your body

Infertility can have a profound impact on your relationship with your body. Whether it’s not doing what you want it to do, or there is a physical challenge with your body that makes it difficult or impossible to have children, it’s common to feel disconnected from your body.

You might feel shame, guilt, anger or resentment towards your body that you’d never felt before. Some people wish they had a different body altogether, one that would be able to make a baby easily. Having those kinds of feelings towards your body can bring a lot of loss around the relationship you used to have with yourself - when perhaps there was once trust, connection and presence.

The version of yourself you thought you’d be

Some of us feel we were born to become a parent. Others grew into loving the idea of having children. Either way, we imagine that having a child transforms our identity in a way we deeply desire.

We often hear parents talk about how the love they have for their child is unlike anything they’d ever felt before. They tell stories of feeling a new purpose in life, or of the version of themselves that is strong, dependable, or loving.

When we are experiencing infertility, it’s like there’s a huge wall separating us from these people. We don’t have access to the identity we long to hold. We have all this love stored up inside us that is reserved for our children that doesn’t get to come out. It’s like we’ve lost a version of ourselves that we’ve never had the chance to be.

3 things to do if you are experiencing disenfranchised grief

Let’s take a deep breath. You just read through a lot of losses that you might be feeling, and are perhaps recognizing them for the first time. It’s important to be kind to yourself and recognize that you’re allowed to acknowledge these losses.

Here are a few things you can do to honor your losses and process your disenfranchised grief.

1. Let yourself recognize the losses.

Even though society might not consider these as losses, you get to define your grief for yourself. Going through these losses doesn’t make you weak, and they are not insignificant. These are deep, painful losses that have every right to be seen and honored, and it’s important to give yourself the time, space and support to grieve them. It might feel like too much to recognize all your losses at once, so take your time as you identify the different losses you’ve experienced.

2. Let your feelings out in constructive ways

If we dove headfirst into the ocean of our grief, we might be overwhelmed by its depth. So it’s important to have systems in place to let yourself feel your feelings in ways that help you feel better coming out the other side. Some ways to do that are:

• Talk about your grief with a therapist who can help you manage it
• Set a timer for 10-30 minutes when you sit down to journal
• Go for a walk in the woods and let the nature offer you healing
• As a friend to sit with you while you cry

3. Create healing rituals for your losses

As we’ve discussed, having rituals or ceremonies for what we’ve lost can help us process our grief and be better able to move forward with our lives. They don’t have to be widely known rituals or established ceremonies; you can create an experience that speaks to you. You can use this activity in the Tilly app to help you create your own ritual. A few examples of rituals you can do are:

• Write a letter to what you’ve lost
• Light a candle and say a prayer
• Release something (biodegradable) that represents your loss down a river
• Bury something (biodegradable) in the ground
• Get a tattoo that honors your loss
• Do something creative, like write a song or choreograph a dance, for your loss

How to support someone experiencing disenfranchised grief

If someone you know is going through infertility, or experiencing invisible losses, there are ways that you can support them. Remember that each person has their own unique experience, so there’s no one-size-fits-all approach to healing and grieving. But perhaps these tips can be a starting point as you learn how to support them.

• Ask them what support looks like to them, so you can determine if you’re able to provide any of the things they need. (This can be more effective than asking them what you can do to support them, which forces them to consider for themselves which of their needs are relevant to what you can provide.)

• Don’t stop checking in with them after a short time. For example, as we saw in our miscarriage survey, 4 in 5 of those who experience pregnancy loss feel loved ones move on from providing support too soon.

• Offer to join them in a grieving ritual or ceremony so they’re not alone. You can even suggest that you plan a ritual for them, so they can feel held in their grief.

• Do some research to identify resources available to them, like therapists who specialize in infertility, or local or online grief support groups. Sometimes it’s helpful if you can point them to resources that can provide services that you can’t.

• Be sure to take care of yourself. Remember that you are not responsible for their overall health and well-being. It’s easier to offer support from a genuine and caring place when you have what you need to feel supported yourself. It’s okay to have boundaries about when and how you offer support, which you can lovingly communicate.

• Invest in your friendship or relationship with them in other ways too. Keep having your weekly bowling nights, or invite them to try a new restaurant with you. It can be helpful for people who are grieving to also have distractions sometimes so they can remember they are a whole person with a life outside of their loss.