I am Mindy Uhrlaub
a family member in a familial ALS family,
a family member of someone we've lost to ALS,
a friend of someone living with ALS,
an ALS gene carrier
California
For several years, I kept my genetic results as a C9orf72 gene carrier a secret. The only people other than my doctor who knew were my husband, my brother, and my parents. I asked all of them to keep my news quiet until I told my kids three years later, when they were old enough and mature enough – at 17 and 15 – to deal with it.
Know Your Audience: Navigating Friendships After Your Genetic Results Come Back Positive for ALS
By Mindy Uhrlaub
For several years, I kept my genetic results as a C9orf72 gene carrier a secret. The only people other than my doctor who knew were my husband, my brother, and my parents. I asked all of them to keep my news quiet until I told my kids three years later, when they were old enough and mature enough – at 17 and 15 – to deal with it. Once I’d outed myself to my sons, I really wasn’t bothered by other people knowing. Little did I understand that navigating relationships in the wake of broadcasting my genetic news could be treacherous.
People’s reactions to my news could be summed up in three categories:
1. We’re still friends, no matter what your news is,
2. I’m devastated by this and am having trouble with it, or
3. This is too much trauma for me, and we are not friends anymore.
Fortunately, I have many friends whom I’ve known long enough that most of their reactions fell into the first category. Most of the people I told were supportive of my decision to take part in medical research, even if they were sad to hear I was positive for the C9 gene. Many of them have offered to fly across the country and hold my hand while I get a spinal tap. And some of them regularly ask intelligent questions like, “Do you still feel like you’re asymptomatic?” or “How are you feeling about getting those results? Do you ever regret it?”
Some of them – including some relatives and people in my writing community – were deeply enough affected by my disclosing my genetic test results that they said, “This news really hit me hard,” or “Why didn’t you consider my feelings and tell me earlier?” My reaction was immediate, and I felt empathy for them. I told them honestly that I was sorry that I’d been abrupt with my news and could appreciate their feelings, but inside I felt I was the one with the lousy diagnosis – not them.
In the last category of responses, I received things like, “What am I supposed to do with that information?” to which I replied, “You asked how I was doing, and I told you. Do with it whatever you want.” I’ve never been good at diplomacy or sugar-coating. A true friend wouldn’t ask me something like that. I wasn’t sad to let this friend go. He obviously wasn’t a real friend.
The hardest thing to navigate is a friend who ghosts after hearing about C9 ALS or my genetic results. Most of them just don’t have the bandwidth to go there with me. Recently, I had a beer with a friend whose son had died from a drug overdose some years before. She lost her son the same week that I lost my mom to ALS. We grieved together, and while she was in the first weeks after losing her boy, I’d brought meals to her and her extended family. I thought we were close enough for me to share my genetic results with her. I was wrong. When I said, “I have the ALS gene that killed my mom,” her response was, “That sucks. I have to go.”
She put down her unfinished beer and left. I have not seen or heard from her in over a year.
Another friend has canceled lunch and dinner plans over and over since I told her about my C9 genetic diagnosis. When she texts, “So sorry to flake again,” I’m so tempted to say, “You don’t have it in you to be my friend,” or “You’re not strong enough to handle ALS,” but what I say is, “No worries. I’m used to it.”
When it comes down to it, I don’t have time for people who can’t be kind in the wake of this news. ALS makes us realize how short and precious life is. And the life I’ve been lucky enough to have should be spent with friends who love all of me – even the ALS.
If you have had a similar experience as mine, the I AM ALS Familial ALS Community Team and I AM ALS Peer Support Initiative welcome you to reach out for support. The Familial Community Team helped me realize that although Familial ALS is rare, I am not alone in my fight against C9 ALS. The Familial community is strong. Together we sympathize with each other, brainstorm ideas for presymptomatic carriers to participate in research, and reach out to other asymptomatic carriers. The Peer Support Initiative pairs people new to the FALS Community with those who either have active ALS or have known their positive genetic status longer.
Sign up or learn more about the I AM ALS Familial ALS Community Team here.
Learn more about the Peer Support Initiative here.
