There are many different kinds of ambiguous losses that individuals in our community experience and navigate, which is often why so many in our community experience as much grief as they do. Though these losses can be quite significant, they are not talked about nearly enough. This can lead many in our community to question what they are experiencing and feel very confused, even isolated. This is exactly what we want to try and avoid, if possible. Although talking about grief does not make it go away, our goal is not to minimize any grief or loss you may be navigating or experiencing, as we instead want to shed light on it, normalize it, and provide you with tools that can help you invite your grief in, grow with your grief, and view it in a more compassionate way.

Individuals in our community may experience grief related and/or secondary to:

1.) Navigating changes to our autonomy, as we may be more reliant on others when completing tasks such as bathing, grocery shopping, driving, and cleaning, and may need to move in with family members who can help. These changes often look different for individuals in our community, as symptom severity can vary quite considerably.

2.) Navigating career changes which can involve an inability to work, or the need to reduce hours, or change fields entirely. As many of us view our careers as an important part of our identity, this can be especially painful, particularly when the change happens so suddenly. This can also exaggerate or lead to grief around financial difficulties which we mention next.

3.) Navigating financial difficulties secondary to an inability to work, difficulty accessing or being approved for disability assistance, reduced hours, medical bills, and/or traveling to see specialists. This can be very difficult as it can also lead to changes in autonomy, may restrict the medical care we can access, or may limit us in other significant ways.

4.) Navigating changes to our bodily integrity or appearance, as some in our community may have central lines, nasogastric tubes, gastric tubes, ostomies, (just to name a few, this is not representative of all), or may notice other visible changes to their weight, skin, hair, or other parts of their body. This can be very difficult to navigate as we grieve the bodies that were once so familiar to us, and adapt to all of these new and sometimes sudden changes.

5.) Navigating relationship changes, as we may experience the loss of friendships, relationships with family members, co-workers, or other significant changes. Even more difficult is that these losses can occur during periods of time when we feel especially vulnerable and need more support from these people in our lives, not less. These changing dynamics often can exaggerate the loss and grief we already may be experiencing.

6.) Navigating the unpredictability of our symptoms and how this can impact our relationships, ability to attend or RSVP to events, and daily activities. Many of us become forced to adapt our daily or weekly plans based on our symptoms, which may flare-up erratically due to things that may be outside of our control. We can work, and do work, to gain insight into patterns and signs that give us more control over our bodies, as we work to reduce the frequency and severity of symptoms and flare-ups, but this doesn’t mean that these changes can’t exaggerate our grief.

7.) Navigating changes to traveling and what that may look like for us. Although many in our community are still able to travel, it may look much different than it did before, as we are forced to plan ahead in ways that can be frustrating. Some in our community may also feel uncomfortable traveling despite wanting to, or financial situations may be the main concern, which can bring up more grief.

8.) Navigating changes to coping mechanisms that we would previously rely on when struggling or having a difficult day. If, for example, we used to rely on physical activity to cope with difficult emotions, this can present added challenges when unable to engage in these activities as often or in the same way.

9.) Navigating changes specific to what we can do physically, as many in our community may have more physical limitations, may have chronic pain, and may be reminded of these limitations quite often. This can include our ability to drive, walk, shower, take baths, engage in sports or forms of dance we used to enjoy, and may also include our ability to perform daily tasks such as laundry, cooking, or dishes. These changes can be very difficult to navigate for so many in our community. Although we may still be able to do some or all of these with modifications, it can still be felt as a loss specific to what we may have been accustomed to previously.

10.) Navigating changes to our mental health can also be challenging. Some may experience anxiety specific to symptoms that may be more frightening, like presyncope or syncope, where others may be battling medical trauma, depression, other forms of trauma, and other mental health challenges. This is made worse by so many providers and others blaming our illnesses on mental health struggles, and dismissing symptoms or our experiences. There is no room for this dismissal as individuals in our community need to be adequately supported, believed, and listened to.

11.) Navigating changes to what we may be able to wear or need to wear. Some of us may have wardrobe limitations specific to needing to wear compression garments, while others may need to incorporate more cooling garments or other articles of clothing, with some articles of clothing we used to love being more difficult to wear.

12.) Navigating the use of mobility devices and the reactions from others. Relying on mobility devices and aids can be a difficult adjustment, as even if we only need them during flare-ups, we may experience poor reactions from others around us. These poor reactions can include a mixture of judgment, disbelief, dismissal, or worse treatment. Some in our lives may struggle to understand why we need to use a wheelchair or rollator one day, and not need it the next. Others may question how young some in our community are and use those judgments to make painful assumptions, all which can exaggerate grief.

13.) Navigating the need for accommodations when in school or when working. This can be especially difficult when accommodations are not made readily available, are not respected, or are used as a way to discriminate against some in our community. It can already be a difficult adjustment to need accommodations, especially when the change is rather sudden, but is made more difficult by the poor reactions others may have, especially when accommodations can be essential for us.

14.) Navigating changes to what parenting may look like for us if we had children prior to becoming sick. This may be especially difficult as we may be more limited by what we can physically do with our children, and depending on the age of children, it may be difficult for them to understand. Even if they do understand, it can be challenging! This is not something that many in our community anticipated and can require added support, understanding, self-compassion, and patience.

15.) Navigating changes specific to our ability to have children, desire to have children, and potential struggles with infertility. Although many in our community are still able to have children, some may not be, and others may decide they no longer wish to have children. This is very painful for many reasons. It is not something that is talked about often, but it really should be discussed openly and those in our community navigating this grief should have access to adequate support and resources.

16.) Navigating changes specific to taking additional COVID-19 precautions. This is very difficult because many are no longer taking precautions, may not be wearing masks, and may be less willing to take those precautions when around individuals in our community who may be at higher risk when exposed to the virus. As many in our community developed POTS secondary to COVID-19 infections, sometimes referred to as Long COVID, it is important for many of us to continue to be vigilant and careful when it comes to reducing exposure. This can exaggerate grief for many as it may be difficult to see so many around us not taking precautions, and may lead us to miss out on even more events or gatherings as a result, potentially worsening isolation we may already experience.

Although this does not include all reasons individuals in our community may be experiencing a great deal of grief, it touches upon many of them. When looking through this list it should not be surprising why grief can feel so heavy for many in our community and is why we are dedicating as much time and space to discussing it openly. This is why supportive, loving, and inclusive communities are so essential, and why surrounding ourselves with those who understand is crucial. There is no room for disbelief, dismissal, judgment, and added pain from others. We need to work to create healthy boundaries and maintain relationships that are healthy, leaving us feeling more supported and fulfilled, as we grow and move forward with our grief.