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 have 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 that of my family is never predictable. Which could make maintaining lasting relationships difficult. But, that has not been my experience.
Over the years, I have 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 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, I want friends and family to understand why I may not be at my best without them feeling sorry for me. At times, I have 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.
In October of 2014, my husband Jeffrey and I uprooted our family of four from the suburbs of Washington, DC and moved west to Santa Barbara, CA. I grew up in the DC area, my life, my family, my doctors, and my best girlfriends in the entire world live there. While moving from your support network is hard for any reason; it is especially difficult when you have developed networks of individuals that understand and love you with all of your health issues.
The move was the best decision for my immediate family. My health is better on the West Coast, more even temperatures. No more horrible cold winters and hot humid summers. Santa Barbara has less people, less traffic and a relaxed slower lifestyle which all agree with our family. The move came with sacrifices, leaving my support system and having to forge new ones. I have found that when you are honest from the start about your health it makes relationships a little easier. Everyone in this world has struggles, finding and maintaining friends will be so much easier when you up front share yours.
At a certain point, Jeffrey and I realized that we would have to tolerate the intolerable, and manage my health. I would likely
and never be cured. What was essential was within this space, I needed to find tools to live the best life in my body, to make peace with this life. I needed to strengthen the relationships with the people who could understand this. The ones that loved me at my core, not the girl who "used to" do activities with them.
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 just 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, laugh and be the best friend ever... It just means I'm on the sofa or on the phone, not drinking martinis at midnight. (I'll just add that most "healthy" mothers of two aren't doing that either!)
Here are my tips for sustaining lasting friendships while struggling with severe chronic illness.
My chronic disease is like having a perpetual toddler so 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 is exactly what my body is doing to me. For no reason my body has decided that it is not going to behave today, that means it's going to be a bad day. We all love toddlers; but we all know they can be a hot mess. You never know when she is going to have a meltdown (i.e. a "flare") and toddlers are amazing in that they are fantastically unpredictable. Toddlers have personalities, charming, delightful but one wrong look, twenty minutes overdue for a nap and you are going to pay the price. My body does the same to me, too long in the hot sun, 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 will need to cancel some activities on short notice.
How about a wine and cheese party in bed
: When was the last time you had your best girlfriends over for a glass of wine? When I have been in bed too long thanks to my health, I know I need to see my girls. The ones who make me laugh and will talk to me about the normal stuff--let's be honest the life gossip! One of my favorites is when I had a cocktail party in my bedroom. You got it. We had snacks and wine on my bed. They grab the glasses, they know where to find my wine, and carry it all upstairs. My girlfriends come over climb up on 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, they went home at seven happy to have been with me and I was sound asleep at 8. Jeff may have slept on a bed with a bunch of crumbs that night, but I slept perfectly, with a smile on my face for days.
I'm the queen of text parties
. How often does it happen that I feel great only to have my children come down with the dreaded stomach flu the one night in three months I'm ready to go out. My solution, text parties during movie award season. My besties and I send group texts discussing who wore what and who shouldn't have! It's the best. I have had one of my girls over and we are texting the one girl who was home with a husband traveling or a sick kiddo. It reminds us that no matter a friend's schedule or health, we can all still enjoy an evening together. You will also be shocked how often you laugh out loud when reading texts.
I still love lunch dates with my best girlfriends.
How about take-out 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 take-out. It also tastes just as amazing on my sofa in my sweats.
Movie night, coffee or brunch, what about yoga in your home?
My sister gave me a world class meditation class in the sunlight of my living room floor. 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.
Being a good friend also means being able to step outside your illness.
Being sent to bed is very different from choosing to spend the day in bed. I've lost track of how many times I have been sent to bed by my doctors.
Everyone has struggles in their life. Everyone. When you live with chronic disease it sometimes is 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 and taken some serious phone calls talking my friends through crisis. Sometimes you have to remind yourself that it's not always about you.
As the world's biggest type A, I love to have my make-up on, and my house perfect, but what I have learned is that no one really cares, when your best friends haven't seen you for however long. They really don't care... They really just want to be with you, to laugh, see you and to know that you are 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 door mat.
As always, the Divine in me bows to the Divine in you.--Namaste
If this post resonated with you, then I think you'll like;
Chronic disease is like a bad boyfriend
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XO
Kathryn
PilgrimageGal
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