But I Don't Have Hives!

Have you ever questioned whether or not you fit in? I don’t mean that feeling you probably had as a teenager in high school where you just didn’t know where you belonged. And I’m not really talking about the emotion of feeling like you don’t fit in. I’m more referring to how I align with what is expected of me, particularly as it relates to my diagnosis of chronic hives. Do my experiences with chronic hives fit the typical list of symptoms most people think of when I say I have chronic hives?

Struggling to fit in

I feel like I’ve struggled to fit in my whole life, and to be honest, my diagnosis of chronic hives is no different. If I told you that I have a diagnosis of chronic hives, you would think that I would have raised itchy bumps on my skin. I’ve mentioned in other articles that I’ve written, that my chronic hives are caused by an autoimmune condition called Chronic Spontaneous Urticaria, or CSU, where the “urticaria” part means hives. But I don’t have hives? Nope. CSU can also cause angioedema, or swelling. With CSU, you can have either hives, swelling, or a combination of both. I primarily struggle with the swelling part and rarely have actual hives. So, although I have a diagnosis of chronic hives, I don’t really mean “hives”, but rather the diagnosis.

Hives manifest in a different way

I am a member of a couple of Facebook groups for chronic hives. Many times people will post pictures of themselves covered in hives and looking for help. But here’s the part where I feel like I don't quite fit in. I don’t have any of those pictures of myself covered in hives. So how do I fit in with this community when my physical appearance does not align with those who are covered in hives from head to toe? This is my dilemma. Do I really fit in with these people who actually have hives? Or do I remain the outcast whose hives manifest in a very different way?

Same condition, different experiences

Any diagnosis can leave you with questions. No one experiences the same disease in exactly the same way. One of my other primary diagnoses is a genetic condition called Ehlers-Danlos Syndrome, or EDS. Let me tell you, no two people with EDS have the same presentation of symptoms. While EDS causes me chronic pain, fatigue, and migraines, my friend with EDS struggles with digestion, joint dislocations, and hernias. But do we have the same condition? Yes, yes we do. So I guess the same can be said of my hives diagnosis— I don’t have hives, but the name of my condition is the same as those who do.

MCAS symptoms

I attended a conference last year that focused on a condition called Mast Cell Activation Syndrome, or MCAS for short. I was lucky enough to meet an awesome group of people who struggle with MCAS and other mast cell-related diseases. CSU is a mast cell-based condition, but it is not MCAS. I have many of the same symptoms as my new friends, but my condition is a far cry from the things they experience. While I love the care and support offered by these new friends, I often struggle with whether or not I truly fit in with them.

Where are my hives?

Living with chronic conditions has left me feeling isolated, but feeling like I don’t fit in with my diagnosis leaves me feeling even more isolated sometimes. I say I have chronic hives, but where are my hives? I have a mast cell disease, but not the same way my friends do. So how do I reconcile these feelings? For me, it comes down to the support I feel from the chronic hives community and from my friends. No two people are the same, and no two diagnoses are the same, but it is still possible to be encouraged and supported by people who experience similar things. I am thankful every day to have people around me who don’t judge me based on the name of my condition and who can commiserate with me because they feel the same kind of isolation I do, regardless of the cause.

Do you feel isolated or like you don’t fit in because of your chronic hives diagnosis? How do you combat those negative feelings? Let us know in the comments below, or consider sharing your history with chronic hives here.