Six Confessions of Living With a Chronic Illness

It’s hard to be honest about how you feel with chronic hives because, ultimately, unless you have them, you don’t understand the frustration and pain that can come along with it. If I could count how many times I have woken up with the feeling of a 90-year-old, covered in hives and achy joints, trapped in a mid-30s body, I would probably have lost count of fingers and toes. So, being honest, here are six confessions of living with a chronic illness:

I always feel guilty

I feel guilty talking about my hives. I feel guilty to back out of plans because I am covered in hives. I feel guilty that this topic has taken over my conversations and become a personality trait of my life. Not just a chronic illness. The truth is that I shouldn’t feel guilty because this is not something I have control over, nor can I stop on command. It appeared overnight, and I am taking care of it with a professional doctor. Guilt can come and go. But it is best to remember that you can only control how you react, not how you feel.

I feel like I am alone

Because having hives makes you miss out on things you normally would partake in, so, and your eyes or lips are swollen from angioedema; it can be a lonesome chronic issue. When it's blazing hot, you may miss that baseball game, or you wake up and your eyes or lips are swollen from angioedema,it may mean you missed an important meeting or event. Honestly, these things can feel isolating. Coming out of the pandemic, I have realized that these feelings of isolation are personal. So, to combat that, I try to schedule phone calls with friends and family and/or take time to journal when these feelings overwhelm me. You aren’t alone. You have a community right here that knows what you're going through. Make time to get to know those people so that you have a sounding board when those feelings hit.

I’m almost always in pain

When I do have hives, most people first ask, ‘Do they hurt?” And a lot of times, they do. The swelling, the itchiness, the uncomfortability of it all can make things worse. But I don’t want to walk around and complain about my joints aching or itching. Because who wants to talk to someone like that? I think there is a balance between sharing these moments with friends and family who support you and knowing when the pain is too much. Hopefully, you can track and share these days with your doctor so that they know when the pain management can be elevated or decreased. Be sure to connect with a professional about your needs.

I don’t look sick

While hives are very noticeable, people don’t see the underlying pain or irritation that you are experiencing. They think you are just itchy and may have some sort of rash. But sometimes the hives have been so bad that I am nauseous and feel like I could be sick. Sometimes they are so sensitive that I have to break out ice packs at work and take 5 minutes. Just because you don’t show your sickness doesn’t mean you aren’t valid in your feelings. Make sure you take the time to feel relief.

Not all doctors understand

I’ve touched on this in one of my previous posts but, make sure you have a doctor who is willing to listen and hear you out. Patients are only as strong as the doctors who get to know them. If you find yourself with a doctor who doesn’t seem to be ‘getting it,’ do your research to find another. I’ve made several switches during my tenure with chronic hives and finally have a doctor who I feel fits best.

I feel like a failure

Ever feel like you’re running on a hamster wheel and you’re never getting anywhere? That can be mentally exhausting. The fact is you are not a failure if you can’t manage your hives or find a pattern of flare-ups yet. The idiopathic part of this illness is that every time you think you have it figured out, there is always going to be a pop-up moment that doesn’t fit where you think it should. You are not a failure if biologics don’t work for you. Or if the medication you are on isn’t the best fit. You are putting yourself out there each day to find a cure for something very unpredictable. Give yourself some credit that you are due. Be proud that you are surviving amongst fellow chronic hive-rs like us. This too shall pass.

Whatever you do, just keep going!