Telling people about your diagnosis

[Dagmar]

I also had a difficult time deciding when and who to tell. Close family members knew, but my circle of friends didn’t. What worked for me was waiting for a local ALS awareness event (May happens to be ALS Awareness Month) – – then I emailed friends about the event – – asking them to participate (or at least share it with someone else) AND in the email I shared why it was important to me, because I was recently diagnosed with ALS. This way, my friends had answers to “what is it?” questions.

These are also good resources:
https://www.als.org/navigating-als/newly-diagnosed/share-your-ALS-diagnosis

https://alsandwellness.blogspot.com/2023/11/conquering-gap-between-als-diagnosis.html

[Jennifer O'Brien]

Hi, Sara,

I ended up waiting more than a year before telling those beyond my immediate family and closest friends because my initial symptom was so mild. This was a good decision for me.

Wishing you all the best.

Jennifer

[Denice]

In the beginning I was experiencing many symptoms, mainly, voice loss. So, it was hard to hide the fact that something strange was going on with my health. As I worked my way through numerous

doctors visits, family and friends kept asking me how I was doing. My health was never a secret to anyone. However, even if I had been diagnosed with ALS with no apparent symptoms, I know I would still tell family and friends right away. I believe there’s power in numbers. The more who know, the more support and prayers surround you. Maybe that’s why I am slowly progressing. The power of prayer is working! Which ever choice one makes in telling family and friends, I would bet they would want to know sooner than later. They love you.

[maru]

Hi Sarah,

I was diagnosed on August 2024.

My symptoms are obvious, since it I don’t speak as I used to.

I think that telling people is important, because nobody should live with this sickness alone. If people who care about you know, they’ll help you through your grieving, pray for you and help you in the process, looking for information and guidance.

Faith and family and friends is what keep me standing, working and doing a lot of therapy to slow down progression of the disease.

It is also important to create awareness so everyone can give support and hopefully sooner than later the cure will be found.

[Jeff_B]

Sorry for the belated reply. I flagged it for comment and just getting back to it. This is an under-appreciated topic, one that I also dealt with in my own ALS journey, and one worth commenting on. Before I share my experience, I would like to preface it with an observation that I think is important. No two ALS journeys are the same. While there are some common issues we deal with, their order, magnitude, and implications vary dramatically. More importantly, we as individuals vary dramatically in our life experiences, physical, and emotional makeups. So what is right for one might not be right for another. With that as backdrop, we gather as much information as possible, overlay that with our individual circumstances, and make the best decisions we can—decisions that fit us.

I was in my mid–fifties when I was initially diagnosed. My life was at its peak of fullness, personally and professionally. I was a leader at work and in the proverbial sandwich generation at home. Starting to assist aging parents, while my own children had just transitioned to adulthood. I was also highly engaged with friends and my community. Long story short, I had a ton of connections, and my life was quite visible to others.

At the time of diagnosis, my primary symptoms were leg tremors, occasional toe drag and falling. Behind those I was starting to have some slight muscle weakness and fatigue. The fatigue becoming noticeable to me trying to maintain pace in my demanding professional career.

Like many, I remember the day of diagnosis vividly, as if it happened in slow motion, but the week or so afterward is an indistinct blur. I think I was just silently processing it all. Not taking any action. Eventually, after a week or so, I got my wits about me and came to the realization that I didn’t want to keep secrets from those closest to me. It didn’t fit my extroverted personality, and I felt it to be a betrayal of our previously open relationships. The resulting discussions were some of the most difficult and emotional aspects of my entire ALS journey. They were however the right decision for me, further deepening my relationships with them, and opening the door to sharing my journey. This decision was reinforced by the experience I had with the one and only relative, my 95–year–old grandmother, that I did not immediately tell, due to her frailness. She ultimately learned of it from someone else a few months later and was hurt that I didn’t share it. While trying to protect her, I had actually hurt her. She of course, being the great grandmother that she was, forgave me, but it was a mistake I regret to this day.

I waited a few more weeks before approaching my work colleagues and friends. I wasn’t sure exactly when I would start that process, but it was only a couple more weeks after the family discussions when I ran into instances where a colleague or friend would notice that I had stumbled or was lagging behind as we walked for lunch. I waved the incidents off as “I’m OK” and continued on, but it brought home the fact that I faced a choice of progressive false dismissals and excuses, or opening up and disclosing my new challenge. Again, consistent with my prior transparency with friends and colleagues, I quickly came clean with all of them. I did this essentially in two phases, one on one conversations with those I had direct relationships with: close friends, those I worked for, colleagues, and those who worked directly for me. I then asked a select few of them to inform others they thought should know. I never did the broad email thing, but that is just me. In retrospect, it probably would have been inconsistent with my communications approach, which had been more personal and informal.

So that is one person’s approach. I don’t profess it to be the right approach, but it was the approach that best fit me.

I will close with a piece of advice I was given by a serendipitous encounter three days after my diagnosis with a nurse practitioner that knew me well prior. She said that she knew I was the independent, self–reliant type, and worried that I might be hesitant to opening up and letting people in to help me. She then told me that letting people help me was actually like giving them a gift. It allowed them the opportunity to transform their feeling of sadness or helplessness into the powerful gift of kindness. Advice that made a real difference in my journey then and today.

[Davy]

I favor using an advisors group. It was key to my stellar survival of colo-rectal cancer 20+ years back. I openly discussed my condition with close friends and family who I asked to be in my personal support group. It seems especially helpful to abide by group decisions in my behalf while I’m stunned and dumbfounded by my diagnosis. I encourage my doctors to confer with one another. I have a second opinion as well. In the same spirit I use personal advisors who confer about my best choices. These people are friends and family who know my interests well enough to weigh in. They provide support and brainpower as they witness my exams and confer with medical staff, asking important questions and guiding me, while I simply endure times like a rigorous EMG, or understand complicated conditions described by the medics.

I appreciate the uplifting social value of being cared for by the ones I love. Mostly I believe being open about my diagnosis and prognosis opens the door to more information than I find on my own, and leads me to greater wisdom in my health decisions. The practice of dialogue and sociability is rooted deep in our genetics as social creatures. Being part of a group rather rather than an isolated individual is natural and preferred for me. -Davy