blog health migraines

How to Feel Better When You’re Diagnosed with a Chronic Illness

In looking back over the interview with Emily Levy this week, something profound and beautiful stood out for me. As a healthcare advocate, the CEO of Mighty Well, and someone who has Neurological Lyme Disease, she intimately understands chronic illness. Emily’s vision is to spread awareness, and and create a brand and a community that will ultimately change how we all see the illness and wellness.

What stood out for me is this: that by coming together, by being a “friend in the fight” for someone, by talking about illness, we create connections that will help all of us heal. This communication and openness is a shift in how so many people treat being ill (which often leads to seclusion and feeling lonely and alone), because it brings about understanding, acceptance, and normalizes the experience of being ill.

You can listen to the interview with Emily Levy of Mighty Well in episode 119, here:

Having had a few run ins with health issues, I understand that being ill can make you feel isolated. Like you’re different, and like maybe you’re the only one facing this particular brand of illness or life change. When I used to get migraines frequently, I worried that I couldn’t really share about it with people, either because I’d be seen as weak, or that there’d be judgements that the pain was not real.

I can see now that those thoughts were fear talking. Fear wants you to believe that you’re alone. There’s no truth to the thought that I was weak, or that I was somehow making up the pain.

When you’re in that space, of just hearing a diagnosis, or grappling with a flare-up of some sort, or having a difficult day coping with illness or pain (and that could be emotional, mental, or physical), what you need is connection, compassion, a sense of control, and love. In 2009, I reflected, “For a long time, I was very much flailing against this diagnosis. It was not right, it was not fair, and it hit me right in my own spiritual gut.”

And of course, the truth is that you’re not alone, and you’re not the only one, and other people have been through similar things. And it goes beyond that. If you’re battling a chronic illness, you’ll come to realize you are stronger than you’d ever dreamt, that you can tap into a surprisingly deep well of courage, and that there will be both good and bad days.

the truth is that you’re not alone, and you’re not the only one, and other people have been through similar things Click To Tweet

One of the keys to breaking through the fear is communication, which is something I reflected on back in 2009, as well – “there is strength in owning the issue and talking about it.”

This is what Emily Levy, shares, too, in episode 119. When someone is first diagnosed, she suggests that you “ask thoughtful questions, show compassion, and check in with what is going on with” your friend or family member. “Start a conversation around what you can do, and how you can help someone find that joy and purpose, and the the things they love,” she suggests.

Talk about the situation

Sarah von Bargen, in episode 86 shares something similar, albeit from a different standpoint. Stick with me here, but in her discussion about finances, she stated “everyone benefits from talking about your financial situation.” In her experience, when people start to talk open up about their finances, it removes the social taboo of talking about money. She shared a story on her blog about a dinner party where a group of friends started talking about how they eventually saved enough money to afford a home, and once they’d shared, everyone else there seemed relieved that they could now talk about their experiences, too.

As I was thinking about the discussion with Emily, this quote struck me as true for health as well. You and I don’t gain anything by hiding a diagnosis. We don’t gain anything when we hide out and pretend that the thing we’re afraid of doesn’t exist. You get to wholeness, you get to connection by sharing and talking about your experiences. It’s true for finances, and it’s true for health.

You get to wholeness, you get to connection by sharing and talking about your experiences Click To Tweet

Emily shared that one of the things that she does to jumpstart joy in her life is to go to therapy. I’ve done it, too. There’s plenty of things that I haven’t cared to share with a spouse or family member, and others that would benefit from the more objective ear. There have been times I needed advice and times when I needed someone to “hold space” for me so I could share things out loud and process them at the same time.

Everyone benefits from talking about their health situation.

Reach out / Ask for what you need

One of the other points that Emily brings up in our discussion is that the best thing someone can do for someone who has just been diagnosed with a chronic illness is to offer to be there for them in some way. Offer to take the person to the doctor, ask how they are feeling, and make the connection.

And, if you are the one with a diagnosis, ask your friends and family, your employer, for what you need. They will not know what is best for you without your help. And, while it can be really hard to ask for help, or to receive it, it’s also another mark of strength.

I especially adore that this is the kind of approach that Remember Betty (Danny Wood’s foundation to support breast cancer patients) takes, in offering aid. Danny had worked with other groups for a long time before turning his own foundation into a 501(c)3 that focuses on the practical side of supporting someone facing breast cancer. They pay for transportation, food, housing, cover medical bills, because it’s a way of connecting with people who are in the fight, now. You can hear Danny talking about his foundation in episode 109.

I truly enjoyed having Emily on the show, and appreciated her candid nature about her journey and vision. If you want to learn more about her company, Mighty Well, and how you can support a friend in the fight, you can find more at their website.

Have you been recently diagnosed with a chronic illness, and looking for ways to feel better? CEO Emily Levy connected with podcast host Paula Jenkins to talk about Lyme disease and starting her company, Mighty Well and how it helps people live full lives. www.jumpstartyourjoy.com/chronicillness #chronicillness #lymedisease #feelbetter

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