Let’s Talk About Grief and Grieving

Alongside a chronic illness diagnosis, such as POTS, other forms of dysautonomia, or EDS, comes navigating loss. We all experience this loss differently, but there are also many similarities. Many in our community grieve who they were before their health changed for a number of reasons. Perhaps there are things that we used to be able to do with ease that are now incredibly challenging. This can include our overall autonomy, ability to drive, ability to eat certain foods, bathing practices, spontaneity, career aspirations, relationships, daily functioning, and ability to travel, to name a few. What can appear confusing to others is that we may still be able to do some of these things, or perhaps most with some changes, but that doesn’t mean that we don’t experience loss. It may also seem confusing to others when what we are able to do is so inconsistent, as our symptoms or symptom severity can vary so significantly from day to day, even hour to hour. This exaggerates our grief as well because on top of the frustration and inconsistency, loved ones may become frustrated or upset with us for things that are completely out of our control. The added stress on interpersonal relationships is the last thing we need! This is why having loved ones in our lives who understand, are accommodating, and can compromise/adapt/work with us, is so valuable and healthy. This being said, when we don’t have loved ones who understand or who respond in healthy ways, this can lead to the loss of relationships or significant changes to relationships, further exaggerating our grief. Because a great deal of the struggling and coping is not visible, this can lead many to question why we may be grieving as much as we are. Many also expect grief to only be experienced when losing a loved one, when in fact, it is experienced by many in our community specific to their journeys with chronic illness and other forms of loss they find themselves navigating through.

We may find ourselves looking at old pictures, reminded of things we used to be able to do much more easily or how we looked when healthier, and feel hit with waves of sadness. We may find ourselves at an event, frustrated that we can’t attend without worrying about our symptoms or ability to walk, and feel hit with painful reminders of what we were able to do when healthier. We may feel frustrated, sad, and overwhelmed that parenting looks different for us now, or perhaps we are grieving pain around infertility and/or an inability to have children. In these moments we may cry, become more silent, or perhaps we have more trouble concentrating.

Grief often tends to change and morph over time, but it doesn’t usually leave completely. The loss that we feel is significant and at times can feel incredibly heavy and intoxicating. It may be confusing because certain things may trigger us at unusual times, causing us to question why it can overwhelm us randomly or present itself so erratically.

Expecting anyone with a chronic illness diagnosis to suppress their loss is unhealthy, unreasonable, and unfair, as your feelings are valid and present for a reason. Processing your grief and not suppressing the pain you feel can be healing, but it can also be painful. Working with a mental health professional to process your grief so you don’t feel overwhelmed by everything that is coming up for you can be a great option.

Overall, we want you to know that you are not alone in experiencing grief, and that there is no grieving timeline- whether you have battled POTS or other co-occurring conditions for 1 week, 1 month, 3 years, or 25 years, grief may present differently for you with time, but that is usually because we learn how to grow with our grief. As you learn how to invite your grief in, view it in a more compassionate way, and embrace it as a part of your journey with chronic illness, it can begin to feel more manageable, and less confusing and overwhelming.

Below, you can learn more about why individuals with POTS often experience so much grief, why making room for grief is important, and how you can grieve in a healthy way.