Words of support that actually help (and others that don’t)

I cannot emphasize enough the importance of community. I adore my friends and family, and I’m so grateful for all their help and support.

I didn’t spend my entire life sick, but became ill with Cushing’s disease at the age of 18. I never got better. It’s been almost 10 years since then, and in some ways, I’m still adjusting. My needs change from day to day, so it’s not about a learning curve. I need to readjust over and over again.

Lately, I’ve been working hard at telling people about my needs without apologizing. That’s difficult for me because for the longest time, I let my illness make me feel like I was a burden. I was scared to take up space. But I’m working on adjusting and standing by what I need to feel comfortable.

Members of my support system have made a huge difference in helping me communicate my needs. Their positive responses have made me feel more comfortable, and in some cases, their negative responses have made me feel less comfortable and more nervous. I’ll share some statements from my support system that made me feel amazing, and others that made me feel horrible.

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Positive interactions

“Your best is enough.”

I loved this. I’d sent a message to a friend to cancel our plans, and I apologized by saying that I was doing my best. The response helped reassure me, making it more likely that I’d reach out to this person again and be honest.

“Don’t apologize for communicating your needs.”

I’m planning a trip that requires me to board a plane alone for the first time since needing mobility aids. I was nervous about it and sent the person I was visiting a list of things I’d need, apologizing that it was so long. The person responded with the comment above, which for some reason made my heart flutter.

I’d never be upset if someone communicated their needs to me, so why was I nervous to do the same? This comment changed my mindset.

“What can I do to support you?”

This question is my favorite. Since my needs do shift from day to day, some days I don’t need any support while on others I need a ton. The question opens a door for me to communicate how I’m doing.

“Want me to just come over and watch movies with you?”

This suggestion is another of my favorites, especially when I’m not feeling well enough to go out. I love staying home and watching movies, and I’ll happily make (or order) food and snuggle on the couch with anyone. And in this case, all my pain relief is close by, which isn’t the case when I go out.

“I already looked, and the place we’re staying has a bedroom on the first floor.”

I’ve been traveling a bit more lately, and this comment is huge for me. As I’ve mentioned so many times, stairs are my kryptonite. When I have to worry about them, I have difficulty feeling comfortable about agreeing to a trip. However, having someone who looks into details in this way makes a huge difference, eliminating the emotional labor of having to do the research myself.

Negative interactions

“I’ve tried this new tea that works wonders.”

I appreciate the sentiment of this, but I’m chronically ill. No diet, smoothie, or similar item will change that. Of course, I don’t mind recommendations in general, nor do I mind comments like this one from others in the Cushing’s community. But when abled people give me unsolicited advice about my symptoms, I feel like I have to explain my illness all over again.

“You don’t need to ask, just know that I’ll always support you.”

This sentiment is so sweet, but honestly, it doesn’t work. Most of the time, I do have to ask. As much as able-bodied, healthy people like to be allies, they miss the mark sometimes. I have to be able to check in about stairs, room for my mobility aids, and my need to take meds in certain scenarios. Sometimes I just need reassurance that the plans will suit me because I’m not sure they always will.

“It’s accessible, but …”

There are no buts. If the bathroom isn’t on the first floor, if there are two steps to get in, if there aren’t accessible stalls and a table that can handle my wheelchair, it isn’t accessible. There can’t be a “but,” because that “but” affects me too much.

Everybody is learning, and I don’t fault people for not being the perfect allies. That said, I think sharing what made me feel safe (and unsafe) will help others be able to communicate with their own family and friends about what works and what doesn’t.

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.