Ask Me Anything About Adversity: Your Questions, Answered

I have good news and bad news

First, the bad news.

The video, sadly, didn’t happen. Not because I melted down after multiple takes, but because I got sick. Ugh.

I held out as long as possible, but alas, my body had other plans. A couple times I pressed record, only to stare bleary-eyed into the camera.

Not unlike this:

An actual screenshot from my attempted video Q&A.

Fortunately, I was able to rally enough to provide written answers. And my wrists, thankfully, were up to the task. That’s the good news.

I’ll do a video post eventually, I promise. But not today.

Without further ado, here are my answers to your questions from last week. Thank you to everyone who submitted a question!

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Adversity-Related Questions

Vivienne: How do you shift your mindset when you're having a bad day with your disease?

Two strategies work best for me.

The first is the “next day” rule. Basically, if I’m having a bad day, I don’t shy away from the negative emotions. I let myself feel down, but when I wake up the next day, I move on. This way, I feel what I need to feel without letting it fester. It’s a helpful compromise between two undesirable extremes, both of which I’ve experienced.

In the early years of my disease, I suppressed negative feelings or ignored them altogether, which almost always led to a panic attack later on. I learned the hard way that you can’t fool your body.

However, once I stopped ignoring my problems, the pendulum swung in the opposite direction — I’d feel despair for days and weeks at a time. That wasn’t healthy either.

Over time, I’ve learned to feel what needs to be felt today, and to wake up with a clean slate tomorrow. It doesn’t always work, but it does more often than not.

To be clear, this doesn’t mean that if we struggle for more than 24 hours, there’s something wrong with us, or that adversity has a simple on/off switch. Anyone who’s experienced grief, trauma, or illness knows that it’s not that simple.

Rather, it’s a reminder to myself that when I’m at my most resilient, it’s when I’m taking productive action. And to get a good night’s sleep.

Another strategy that helps is to remember my best moments. When I’m feeling down, I open my Notion document which contains a list of my accomplishments and the nice things people have said to me over the years.

It’s a nice pick-me-up and a counterbalance to negative self-talk.

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Ruhie Vaidya

: Do you ever get caught up in thinking about the injustice of the adversity you're facing, and how do you manage this? How do you stop yourself from spiraling down a path of comparison and negativity?

There have definitely been times when I’ve felt as though I’ve been dealt an unfair hand. But I’ve gained enough life experience now to know that, although others might have it “better” than me, there are plenty who have it worse too. And “better” isn’t always what it’s cracked up to be.

Everyone has aspects of their lives that they think are unfair or unjust. We tend to focus on the negatives, and for good reason! Illness is hard. Trauma is hard. Grief is incredibly hard.

The problem is that we often overlook the “fair” parts of our lives. We all have something — whether it’s a relationship, a possession, or our health — that others would do anything to have.

I believe there are reasons God dealt me this hand, even though if it were up to me, I would have lowered the degree of difficulty! If you prefer a less theological perspective, billions of people around the world have different kinds of diseases. Although my particular disease — limb-girdle muscular dystrophy — is rare, having a disease isn’t.

At the end of the day, whether my disease is fair or unfair, it doesn’t change the underlying issue. I have it, and there’s nothing I can do about it. And I’d rather focus on what I can control. That’s the best way I manage it.

To answer your other question, I definitely fall into the comparison trap and am prone to negativity spirals. This article I wrote last July touches on what’s helped me deal with comparison. As for negativity, I’m not the most positive person in the world, so it’s always a struggle. This is where the different resilience strategies I write about on this site come into play. They all help to keep negativity at bay.

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Teyani Whitman

: Can you detail the kinds of things others can do that sincerely help you, or buoy you up, or make you feel seen and supported?

The best thing someone can do to help me is to offer their support any way they feel comfortable. For friends, it could be sending me a text or email to check in and see how I’m doing. For subscribers, it could be reading my posts, leaving a like or comment, becoming a paid subscriber, or sharing my work with others. (Comments mean the world to me!)

Any support helps. It’s not that I need constant reminders of how great I am (although if you want to do that I won’t stop you 😀), but it helps to keep the isolation at bay. Because, frankly, this disease can be incredibly isolating sometimes.

What helps me will help others too. We all have friends and family members who are going through a tough time or are struggling with their mental health. If you haven’t talked to someone in a while, send them a text or email, or give them a call. Ask how they’re doing, and say that you were thinking about them.

These are simple actions, but let me tell you, they make all the difference. What takes you two minutes can permanently brighten someone else’s day.

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Jenny: How can I be more resilient when overwhelmed with several stressful events at once (e.g. moving houses plus exams)? I want to be able to support my family members in times of stress and change, but first I need to figure out how to not be stressed out myself.

You hit the nail on the head: it starts with taking care of yourself! When you’re stressed out, it makes it that much harder to support your family members through their own stressful times. Prioritizing your mental well-being isn’t just great for you, it’s great for them too.

I know what it’s like to deal with several different stressors at once. As you said, it’s overwhelming! In a perfect world, the easy answer would be to take things one at a time, but life’s not that simple, unfortunately.

There are many different answers I could give, but two strategies jump out:

Break things down into smaller pieces. When you’re dealing with multiple challenges at once, it’s easy to get overwhelmed by the totality of what you’re facing.

The key is to break each challenge down into specific tasks and break those tasks into even smaller pieces.

Then, each day, aim to make a little bit of progress. Take those tasks you just created and strive to accomplish at least 1-2 of them per day.

For example, if you’re hiring movers for your move, maybe the first task is to post on Facebook to see if anyone can recommend a reputable company. The next task could be to Google companies with the best ratings in your area, followed by coming up with questions to ask, then calling each company, and then evaluating your options afterward.

If you’re studying for exams, same thing. Break one large exam down into the different topics covered, and work through one topic area per day.

This also works for challenges that aren’t project-based. For those feeling stressed out by life, a “task” could be any simple action to improve your well-being, such as going outside, meditating, or having a brainstorming session. It still counts as progress, and it’s small enough to be achieved in a few minutes’ time.

Rest. We always forget to rest when we’re stressed out. All we see is what needs to be done, and our natural reaction is to push, push, push. But this only leads to burnout and ineffectiveness over the long haul. If you can steal a few hours or days to take a break, it can make all the difference. Rest is how you recharge your batteries and come back refreshed to face what’s ahead.

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Anna Raskind

: I really admire how you share your story in a tasteful way. You share enough personal background and detail to make readers feel invested in you, but also not too much so it ever comes off as oversharing, either. It's definitely an art and you do it so well!

I'm newer to Substack and am still learning....how do you strike that balance?

My main motivation is to share something when it can be useful to others in some way. If my experience can improve someone’s life, then I’ll share what needs to be shared, even if the details are unflattering or painful to recount.

On the other hand, I’ve never felt the need to share every moment of my day on social media. I’m an introvert, and that level of exposure isn’t my strength.

When it comes to sharing, it’s important to think about your underlying motivations and what you want to accomplish.

If your default is to share nothing, there’s nothing wrong with that, but if you’re trying to build a business or grow a newsletter, you’ll have to put yourself out there a little bit.

On the other end of the spectrum, sharing a lot can be bad (we all know people who share wayyyyy too much on social media), but it can also be beneficial. For example:

• If you’re writing a book, sharing the details of your writing process is how people learn about the book and become invested in its success.

• If you’re an advocate, sharing everyday moments is necessary to raise awareness for a disease or to highlight pressing issues or inequalities.

• If you want to help others avoid the mistakes you made, or if you’re looking to destigmatize something, it’s sometimes necessary to go into the nitty-gritty of the experience.

At the end of the day, do what makes you feel comfortable. But make sure you understand your reasons for wanting to share/not share.

For example, if you want to share more but you’re lacking confidence, I covered this topic last February.

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Cherie Lee

: I would be interested to know what you are most grateful for in your life that would not exist had it not been for your disease.

Excellent question, Cherie! As much as this disease stinks, it has given me many blessings, which include:

1. Deeper relationships - I am closer with my friends and family because of this disease. I’ve had to share my struggles with them, and in turn, they’ve shared their struggles with me. Sometimes, there is beauty in the pain.

2. Stronger purpose - This disease has forced me to think about the meaning of life. I’ve spent many sleepless nights dwelling on my purpose, why I’m going through this, and what’s the point of it all. Through this self-reflection, I’ve found my purpose for persevering, a purpose centered on faith, family, friends, and helping others.

3. Writing - I was a writer before this disease but I didn’t take it seriously as a career. Now, I do. This newsletter would not exist without my disease. Neither would the book I’m writing.

4. The people in my life - Everyone I’ve met since 2008, without exception, has been because of this disease. All my coworkers. (Including Carly.) My friends from business school. Members of the rare disease community. Other writers on Substack. Readers of Hello, Adversity. The list goes on and on.

   I didn’t have a lot of friends growing up. Now I have many. Without this disease, our paths would never have crossed.

5. Self-confidence - I’ve come a long way from the shy, insecure kid I was growing up. This disease has put me through the wringer, but I’ve somehow managed to pick up the pieces and build a new life for myself. My resilience has given me confidence I never had before. Granted, I wish it didn’t take a muscle disease to reveal my inner strength, but it’s been a nice revelation.

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Nausherwan Ghaffar

: I’d like to ask if you’ve ever fallen into a cycle of catastrophizing and, if yes, how you’ve addressed it?

Never. Not once.

I’m kidding, of course. I catastrophize all the time. Way too often, in fact. Something bad happens, and my mind immediately goes to worst-case scenarios.

It’s a bad habit, made worse by a fruitful imagination.

What’s worked? I call myself out on my predictions. It turns out, what I believe will happen rarely comes to pass.

A few years ago, I began writing down all my scary predictions for the future, which I update any time a new fear arises. Then, every few months, I go over the list to see if my predictions came true.

What I’ve found is that the worst-case scenario rarely happens. Sometimes it does (I was right that the 2023 Red Sox season would be a trainwreck), but not that often.

Catastrophizing never stops; it’s a natural human response. But I’m getting better at reminding myself that I have no idea what the future holds.

Here’s an article I wrote about catastrophizing last year.

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Bonus Questions

Anonymous friend: What other language would you like to learn?

Definitely French or Italian — my two ancestral languages. I’ve tried learning them on Duolingo and although I made it through the beginner lessons, I couldn’t stick it out. I’d like to try again sometime next year.

Jimmy Lee - I see in the suggestions area that you had a scratched bullet point about Uconn basketball. I’m sure that it’s just an in-joke, but do you follow Uconn basketball? And if so, did you attend Uconn?

Then my follow-up questions are: How do you feel about the state of the men’s team over the last 3-5 years? And do you think Geno Auriemma should retire as coach of the Uconn women’s team, as they haven’t quite performed to their legacy in recent years?

Jimmy - thank you for the Uconn question! I could talk all day about Uconn basketball.

To answer your questions in order:

1. I didn’t go to Uconn, but here in Connecticut, Uconn basketball is the only game in town. We used to have an NHL team, the Hartford Whalers, but “he-who-shall-not-be-named” moved the team to Carolina in 1997.

2. I feel great about the state of the Uconn men. Back-to-back national championships will do that! Seven years ago, when they were toiling away in an obscure conference, I never thought they would win a title again. (Speaking of not being able to predict the future.) Few things bring me as much joy as Uconn basketball, so it means a lot to see them back on top.

3. Geno’s been a coach for almost 40 years, so my sense is he wants to win one more championship before he retires. Some are doom and gloom about him, that the game has passed him by, etc., but I don’t think that’s the case at all. The team has had an absolutely brutal rash of injuries these past few seasons, and even with half a team, they still made the Final Four last year. I think what’s changed since his last championship is that the women’s game now has more parity than it’s ever had. Which is a very, very good thing.

   If they can stay healthy this year — a huge if — then I feel good about their chances!