Read more:

My life is different from everyone in my inner circle. My closest friends and my family don’t have the medical struggles that I face. I won the medical lottery; I’ve been diagnosed with multiple severe and at times life-threatening rare diseases, in addition to managing other conditions that have sprung up as a result. Having a rare disease means my life and my family’s life is never predictable. That could make maintaining lasting relationships difficult. But that hasn’t been my experience.

Over the years, I’ve learned how to educate my friends and family so they know all about my health. While I never get a day off from management of my health, I also don’t want my relationships to be about my health. You have to find the balance between sharing your truth and still living life. It’s a fine line because I want friends and family to understand why I may not be at my best without them feeling sorry for me. At times, I’ve tried to make light of some of my struggles with humor to put people at ease. I also work diligently to explain how hard it is to live in a body that has betrayed me and share that truth with honesty and love.

I’ve found that when you’re honest from the start about your health, it makes relationships a little easier. Everyone in this world has struggles, and I believe finding and maintaining friends is so much easier when you share yours.


I found that my “true” friends are the friends who wanted to “be with me,” not “do things with me.” The two are quite different. We often forget that underneath the label of chronic illness, we are still ourselves. Each of us is still funny, smart, charming and the life of the party. Often it’s just that the party location may need to change. My life is filled with a circle of love, the best girlfriends one could ever dream. I still listen and laugh, and I can still be the best friend ever — it just means I’m on the sofa or on the phone, not drinking martinis at midnight.

Here are my tips for sustaining lasting friendships while struggling with severe chronic illness.

1. My chronic disease is like having a perpetual toddler, so I plan ahead and have a back-up plan. My husband and I like to joke that we have three children: our two real kids and the perpetual toddler that is my chronic disease. Everyone has seen a toddler lose it in a public place; well, some mornings I wake up and realize that’s exactly what my body is doing to me. Toddlers have personalities; they’re charming and delightful, but if they get one wrong look or are 20 minutes overdue for a nap, you’re going to pay the price. My body does the same to me, like when I’ve spent too long in the hot sun or too long on my feet when I should be resting. My body will shut down and I can be in bed for days. So be flexible, be ready to change plans and know that you’ll need to cancel some activities on short notice.

2. I host wine and cheese parties in bed. When I have been in bed too long because of my health, I know I need to see my girls — the ones who make me laugh and talk to me about the normal, life-gossip stuff. One time I had a cocktail party in my bedroom. We had snacks and wine on my bed. They grab the glasses and wine, carry it all upstairs and climb onto my king-size bed. I sipped on some tea and they have wine (always in my Waterford crystal glasses) and eat cheese and fruit. We laughed and giggled for a couple of hours, then they went home at 7 happy to have been with me and I was sound asleep at 8.

3. I’m the queen of text parties. Regardless of our schedules or health, my girlfriends and I can all enjoy an evening together thanks to text parties. You’d be shocked how often you laugh out loud when reading texts.

4. I love takeout-lunch dates with my best girlfriends. How about takeout-lunch on your sofa? Who needs to sit in a restaurant all dressed up when your biggest accomplishment for the day is brushing your teeth and showering? I have a favorite Thai place that has the most amazing takeout. It also tastes just as amazing on the sofa in my sweats.

5. My living room can be a place for yoga class and therapy sessions. My sister gave me a world-class meditation class in the sunlight on my living room floor. It was just the two of us, her voice and the best meditation warmed by the sun’s healing rays. My living room has also been home to therapy sessions, impromptu yoga class and the best prayer group meetings.

6. Being a good friend also means being able to step outside my illness. When you live with chronic disease, it sometimes it’s easy to get caught up in your world of doctors and treatments and forget that your closest friends’ lives are still spinning, too. I’ve been in bed countless times while talking my friends through crises over the phone. Sometimes you have to remind yourself that it’s not always about you.

Because I have a type-A personality, I love to have my makeup on and my house perfect, but what I’ve learned is your friends don’t care about that when they haven’t seen you in a long time. They just want to be with you, to laugh and know you’re one day closer to being back up and running the world. You don’t have to leave your home when you aren’t at your best. No, you sometimes just need to make sure the key is under the doormat.
Read more: