What I wish people understood about living with Cushing’s disease

I was diagnosed with Cushing’s disease in 2020 after several years of suffering and searching for answers. Since then, many different people have told me their opinions on my illness or given me unsolicited advice. For instance, they’ll say that using my wheelchair less will help my muscles or ask if I’ve tried a particular supplement.

Lately, I’ve been repeating the same phrase in multiple conversations: “I feel misunderstood.”

As much as I wish everyone in my life simply “got” my illness, it’s not that easy. They haven’t lived it, and I can’t blame them for that. Still, I want to be better understood, so I’m going to do my best to explain.

Here are the top things I wish people understood about living with Cushing’s disease.

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Cushing’s disease affects mental health, too. Many patients have depression and anxiety. I try my best to manage it, but sometimes the symptoms are uncontrollable.

Good days don’t mean that I’m cured. It’s awesome that I don’t need a wheelchair on Tuesday, but I might not be able to even get out of bed on Wednesday. I don’t show everyone every single aspect of my life.

I spend a lot of time at home because that’s where all my medical supplies are. It’s easier for a healthy person to go out because they don’t need mobility aids, medication, and pain relief. I’m not a homebody, I’m chronically ill.

I am strong, not weak, because of my illness. I would love for people to spend a day in my body. Many couldn’t handle my pain and symptoms.

Managing a chronic illness is a full-time job. I deal with pain, medications, doctor’s appointments, testing, blood work, and specialists. I don’t have the same amount of free time as a healthy person.

I don’t just experience pain. I’m itchy. I have aches, rashes, acne, and hair loss. Even if my pain is quiet one day, I might feel horrible for a thousand other reasons.

I never feel well-rested. More sleep won’t help. I’m always tired and fatigued, and I probably always will be.

Just because I’m not actively complaining doesn’t mean I’m fine. If I complained about every pain, ache, annoying doctor’s appointment, and pituitary tumor, I would never shut up. But that doesn’t mean I’m OK. I’ve just swallowed the pain.

“You’re different” is (sorry) the stupidest thing someone could say to me. Of course, I’m different. Cushing’s has affected my hormones, I’ve undergone extensive surgery, and I’ve been through an incredible amount. That would change anybody.

I wish people asked me more specific questions about my life. “How are you feeling?” is incredibly hard to answer. I’m upset that I have more tumors. My body hurts. I’m emotionally drowning. It all ends with me saying, “Fine.” Ask me about my writing, my daughter, my house, my recipes, what I like about Michigan, and my husband. Cushing’s disease is the least interesting thing about me.

I’m sure many of you out there feel similarly. It’s hard to feel like people don’t fully understand you, but you have a community in me.

What else do you wish people understood about living with Cushing’s disease? Please comment below. 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.