Chronic Hives and the Constant Cycle of Loss and Hope

Grief is a complex emotion often associated with the passing of a loved one, but it also applies to so many other aspects of life, including chronic illnesses such as chronic hives.

Typically, when we think of grief, it refers to mourning something that happened in the past or someone who is no longer around. However, chronic hives are ongoing, and so is the grief related to them. We grieve not just the past but also the present and the future.

Looking back: Early days of discomfort

As I think about my life with chronic hives, I think about a toddler version of me who was already selective about her clothing and couldn’t properly communicate that some clothing items hurt my skin. I think back to the day I wore an extremely itchy sweater all day long in kindergarten and went home to show all the adults my hives.

The present: Living with constant awareness

When thinking about the present, I find myself acknowledging the discomfort of a life with chronic hives. There are simple light touches from other people—a handshake, a hug, or a nudge on the shoulder. I try to enjoy the moment, ignore the pain, and not noticeably tense up. I wonder how much more enjoyable those moments would be if I didn’t have to think so much about it all.

Small losses of daily life

In the present moment, I also grieve for clothes that would be too painful to wear, especially the lonesome pair of skinny jeans sitting untouched in my closet for the past several years. When I look towards the future, I grieve the life plans made by prior versions of myself. I didn’t expect the pain to increase so much over the years.

As I sit with my grief in association with chronic hives, so much comes to mind. There is the grief of not being able to trust my body not to flare up with a change in appearance, the physical sensation of symptoms, or a combination of both.

Identity and the weight of ongoing loss

Missing out on aspects of life such as makeup, bodycare products, foods, and hobbies to avoid flaring my symptoms is a heavy burden. Leaving behind things that brought me so much joy and not getting to do them any longer is a difficult feeling. This feeling can bring out a certain type of grief related to a loss of identity.

If it feels as if we need to constantly give up parts of ourselves to manage our chronic hives, then it can also turn into the grief of ongoing loss. This means that we’re in a constant state of feeling that chronic hives are constantly taking things away from us. Every time that we find our footing and adjust to our circumstances, another issue to tackle comes along.

The impact of social validation

This type of grief isn’t just due to my body, though. Society’s dismissive attitude toward the difficulties of living with chronic hives plays a major role in how dismissed and invalidated people living with chronic hives feel. It’s so important that when people are going through a difficult time, including when it’s lifelong, that others believe them and validate their experiences. It’s incredibly helpful for people both within this community and outside of it to be kind and understanding of each other and our unique experiences living with chronic hives.

Finding room for hope

Everyone experiences grief in their own way, but we’re together in experiencing grief when it comes to chronic hives. Hope can live alongside grief. It can be practiced both in acceptance and in the ways we search for treatments.

Several years ago, my chronic hives caused me so much pain that I didn’t know how I would manage my present and my future, but I tried out treatments that have significantly improved my quality of life. I hope this is something that others with chronic hives get to experience, too.

Grief associated with chronic hives can be incredibly heavy, but please remember that your life can still be full of so much love, happiness, friendship, romance, and all the other wonderful aspects of life!