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When my doctor told me that I had ALS, my reaction was
like that of most newly diagnosed ALS patients. I felt a jumble of emotions and
desperately wanted to let my friends and family know — but something held me
back. Deep down I knew that when I told others about my ALS, it’d become real, and
I’d have to accept that I had ALS. But I also wanted to wait,
thinking I needed to process every detail and each emotion, and have everything
in order before I shared the news.
Luckily, a phone call with an invitation was the nudge I
needed to get unstuck and speak to others about my condition. The incident
happened only a few months after my diagnosis. I was at home in the
kitchen when the phone rang with a call from my doctor. Rather than having a
medical conversation, she instead invited me to speak at a local ALS
fundraising event for ALS Awareness Month.
Decision paralysis
Only a few seconds went by as my doctor waited for my
answer, but for me, it felt like hours. My mind went through a million
gyrations, everything from snappy comebacks like “Tell my ALS story? I didn’t
even know ALS existed until you told me I had it!” to feeling the weight of
sharing my personal diagnosis story with total strangers. Actually, I wanted
more time to wander in self-pity.
My neurologist was waiting for an answer, and I knew I
shouldn’t back out. Reluctantly, I agreed to show up.
As it turns out, my experience at the fundraising event
completely erased all of my misgivings. I spoke from the heart, and in return,
I felt the compassion in the room and the support surrounding me. My husband
and I had a great time and happily joined in the cheers when the announcement
came at the end of the evening that the event had reached its fundraising goal.
What I learned
Many mental health experts recommend that you wait until
after you’ve come to terms with a diagnosis such as ALS, and feel emotionally
ready to tell others. I believe waiting has its downsides, however.
I think it’s important to receive support from close friends
and family from the start. As much as you may have tried to cover them up,
close family members probably already noticed your symptoms. They suspected
something was wrong, even if they didn’t know what it is. And they may feel
hurt later on when they learn that you’ve been hiding something from them.
People will have questions, and it’s OK to tell them you
don’t have all the answers or simply aren’t ready to discuss them right now.
You can always refer them to a reputable website, such as ALS News Today or Your ALS Guide, for general
information about the disease.
Instead of feeling sorry for myself and worrying if my
family and friends would pity me rather than support me, I discovered that they
were part of my process. Along the way, I taught them how
to help me, what wasn’t
helpful to say, and that I was and still am the same person on the
inside.
Are you a newly diagnosed ALS patient? Or has it been a while
and you still feel intimidated telling friends and family? Don’t put it off.
They’ll become your most important support, both now and in the future.
Let me help you move forward and learn to live well
while living with ALS.
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| Dagmar Munn ALS Wellness Blog |
“Some people are human medicine. You spend an hour with them, and everything feels better”
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A version of this post first appeared as my
column on the ALS News Today website.