I’m having a hard time putting my thoughts into words. Which is why this blog has consisted mostly of Well-Being Wednesday posts for the past couple of weeks. But I don’t want to disappear from this blog again. And I don’t want my blogging to become halfhearted, either. So instead of writing a half-assed Well-Being Wednesday, I spent my time writing this, to share something that’s been swirling around in my head for quite some time.
Expectations. Learning to ask for help. Loneliness. The invisibility of CF.
What I’m struggling with right now involves all of it.
Most days I’m okay. I live my life like many 27 year olds. And I’m able to detach myself from the cystic fibrosis label. I think that’s a good thing.
For the most part.
The downside is that the severity of what having this disease means is often invisible.
Just yesterday I spoke with a man who lost his wife to CF at the age of 41. That’s only 14 years older than I am now. And it TERRIFIES me. Because that’s the reality of this disease. Unless a cure is found, it will kill me. I often tiptoe around this fact because I try to remain positive. But sometimes it feels good to be honest. To show people the ugly side of CF.
I’ve said it before and I’ll say it again: I don’t want pity.
But there are times where I do need acknowledgement. Support. And the understanding that it’s a heavy load to carry.
I can’t do it alone.
I want to make it clear that I appreciate how lucky I am. I have an incredible family who has been there for me at every bump in the road, and continues to be. And I have a boyfriend who deals with much more than most 28 year old guys. He goes above and beyond every.single.day.
But there are times I’m disappointed by people.
I would like to think that if I had a friend or loved one battling something as big as a terminal illness, I would help in any way I could.
And I have both family and friends that do this. They know who they are and I will be forever grateful for them.
There are also people who don’t. There could be a million reasons for this. Me not communicating what I need. Them not understanding the seriousness of this disease. Me expecting too much. The list goes on.
What I struggle with is knowing what to do. Write these people off? Accept them as they are and know who I can count on? Verbalize my feelings?
Being one of 30,000 with a disease there are no in-person support groups for is lonely. Having people rally around you when you need them to makes that loneliness a much lighter burden.
“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others, to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.” ~ Dalai Lama