How I maintain a social life while managing a chronic illness

It’s happening again. I’m at a social event, and I start to feel it. My head hurts. My vision blurs. I begin to dissociate, feeling myself falling away from where I am. I try so hard to focus, to pay attention to the blurring swirls in front of me telling me a story, but I can’t seem to grasp any of it.

Chronic illness flare-ups, or exacerbations, can happen anytime, anywhere. For me, as someone with Cushing’s disease, a flare-up usually involves headaches, vision issues, leg problems, fatigue, and nausea. When I’m home, I have countless tools that can help me manage the pain. I can lie in the dark, apply a cold compress, put on my compression boots, or use one of my heating pads. However, it’s a lot harder for me to manage pain when I’m out and about.

When I first started to experience flare-ups, I’d try to push through them. That was absolutely the wrong path. It was awkward to be woken up at my friend’s birthday party because I’d ignored my symptoms and ended up asleep. It was miserable when I ended up locking myself in the only bathroom at a party because I was so dizzy I couldn’t see straight.

So how do you balance a social life with chronic illness, pain management, and self-care?

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Step 1: Acceptance

First, I had to come to terms with the fact that I’ll be dealing with chronic illness forever. I can’t push through the pain because the pain will still be there the next day, and the day after that. The best way for me to live my life as fully as possible is to embrace who I am, Cushing’s and all.

Part of this means bringing a backpack with me to every social event. My little backpack includes the following:

• Pain medication
• Emergency medication
• Braces for my legs and arms
• Disposable heating pad
• Water
• Tums
• Band-Aids
• Hand sanitizer
• Headphones
• Face masks
• Emergency instructions from my doctor in case I have an adrenal crisis
• Chapstick for my ever-so-dry lips

Step 2: Sharing is caring

If I end up having a low cortisol day, I might need emergency medication. At first, I was worried about letting my friends administer my meds, but over time, it’s become a necessity.

I made a cute PowerPoint presentation that I send to someone before I hang out with them. It includes signs of adrenal insufficiency, an explanation of Cushing’s disease, a list of all my medications, and a step-by-step process of what to do if I need emergency meds.

Having this has been amazing, not only for me, but for my friends. We all feel more confident about my illness, and I know I’ll be taken care of no matter where I go.

Step 3: Saying no

Saying no to plans might seem easy, but for me, that’s not the case. I love new experiences, I love seeing my friends, and I want to be able to say yes to every event and hang out with them whenever I’m invited.

However, I can’t. If I always say yes, I end up burnt out and exhausted. I’ve learned I can only leave my house one or two days a week, tops, and I can have people over one day on top of that. Anything more, and I have to say no.

I’ve also realized that I’m more wiped out during weeks when I’m upping the dosage of my medications, such as ketoconazole, Mounjaro (tirzepatide), and spironolactone. When that happens, I need a completely clear week.

Lastly, if I have plans but am not feeling up to them, I have to cancel. This one has been the hardest for me, but I usually try to say, “This is how I’m feeling. I can’t make it, but I’d love to try to make it up to you. Does next Friday work for you?”

The people who will be in your life long term will understand.

Managing chronic illness and a social life can be exhausting at times, but I’ve found that it’s worth the effort. The friendships and relationships I’ve formed motivate me to do more and be more. Those people are worth working hard for, and they deserve my most authentic self — flare-ups and all.

How do you manage socializing with a chronic illness? Comment and let me know! You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.