The me at the party and the me at home are different

Lately, I’ve been getting my period every two weeks. While I work on getting that back to normal, I’m losing a lot of blood, and my body is especially fatigued because I lack iron. That was especially hard during the holiday season, when I was trying to put my best foot forward but needed regular rest. I was having trouble waking and socializing, and even eating felt like a chore.

Sometimes, I think, people believe that the me they see is the person I am 24/7. They get the idea that I’m not as sick from Cushing’s disease as I say I am, or that I’m better off than I was a year or six months ago. In reality, I do a lot of prep before seeing people. And during that prep time, they wouldn’t recognize me.

I’ve wanted to shout that truth from the rooftops more than usual lately.

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Before an event

Before an event, be it a party, concert, or even just dinner with friends, I have to prepare myself. I take a nice bath to relax my muscles, and then I check out the location. Is it accessible, and if not, will I even be able to go? Prepping my body and mentality to even step foot outside my apartment takes much more effort than many people realize.

If the place is safe for me, I’ll pack up any medication and supplies I could possibly need, including heating pads, pain medication, alcohol pads, and emergency meds. I’ll put on comfortable shoes and pack extra socks and pads in case my period comes early (again). I’ll also take water for the extreme thirst I’m always facing.

At the event

I usually try to put my best foot forward when I’m around other people. Even if I’m in pain, I’ll grin and bear it. Part of my resolve is because I don’t want people to notice what I’m dealing with, and part of it is that I don’t want to make everything about my illness all the time. It can be tiring to talk about it, especially when my symptoms are stagnant.

But the me that everyone typically sees — the smiling, laughing me — is more of a rarity in my life. That’s the me I want you to see. And I love that person, who’s a part of the whole me. But I wish people understood the effort it takes for me to be that smiling person, even for just a few hours.

After the event

This part is the hardest, by far. After any event, I need time to recover. If it’s a long event, such as a wedding, I might need a week of recovery. If it’s smaller, such as a dinner out, I might feel better by the next morning. I sleep on a heating pad and take it easy. This practice might seem relaxing, but it’s horrible for me. I can barely stay awake when recovering, work is out of the question, and I spend most of my time curled up and watching television shows.

I want everyone in my life to understand that the me they see is the best version of me. But other versions of me create the whole person. I don’t resent others who don’t need all this pre- and post-care, but I’d like them to consider all I’ve done for just an hour of socializing.

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.