“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow’.”
― Mary Anne Radmacher
Impact of IBD
Honesty alert: IBD ravaged my life. That is not saying, of course, that I didn’t help it along the way. I have heard many stories similar to mine – about the physical and mental toll that IBD can exert on one’s life.
The journeys are all different, but one of the central themes remains the same – a lot of people living with IBD struggle.
And most, if not all, will feel very alone at some point along the way.
Memory lane
I can remember a lot of dark days in the depths of illness and pain. It felt like I was on an island full of struggle. Times when it felt like there was not a single person on the planet who understood what I was going through. I felt a bitter isolation.
Things are quite a bit better now. It has been a long road back to some semblance of health and functionality.
The purpose of this post is simply to acknowledge all the people out there who are struggling with IBD – those who are trying hard to keep their lives together. Those whose illness, at times, can wreak havoc on work, family, obligations…and all the things that are near and dear to you.
So take a little faith that there is at least one person on the planet who understands, to a point, what you might be going through. I know what it’s like to feel alone in this illness.
Silent struggles
Many diagnosed with IBD struggle invisibly. Some are thriving, but IBD can be unpredictable – you never know when another flare is around the corner. Others are just getting by, regardless of what flashy Pharma commercials and social media posts tell us.
Most of us have gone through periods of feeling lost – waiting for diagnosis, being early in diagnosis, navigating flares, you name it. We isolate ourselves. We suffer in various ways and are unsure of what to do.
I am not writing to complain about all of that. Unfortunately, it is just a fact of life. But, for everyone who writes a book about their experiences with IBD, there are a hundred people out there who are struggling.
For every blog post you read about someone’s life with IBD, another hundred people struggle silently. Likely thousands.
Someone understands
Chances are, you and I will never meet. However, read and know that I understand, at least in part, what you are going through. How chronic illness affects every part of your life.
I recognize your struggle. I appreciate your struggle. I affirm your struggle. I give you credit for pushing on.
I know…sometimes telling people they are not alone can sound like pandering. Those ever-repeated platitudes—”Hang in there, champ,”” Stay positive,”…”Chin up!”
The truth is, a lot of people don’t understand. They cannot understand because they haven’t experienced it. And that’s ok.
It is much the same way I can’t truly understand someone else’s experience going through a cancer diagnosis. Or any other condition.
However, recognizing the common humanity of suffering can sometimes help us feel less alone.
In the words of psychologist Kristen Neff:
“The very definition of being “human” means that one is mortal, vulnerable and imperfect. Therefore, self-compassion involves recognizing that suffering and personal inadequacy is part of the shared human experience – something that we all go through rather than being something that happens to “me” alone.”
Final thoughts
So, what can we take away from all this? One thing – we are not as alone as we think. Often, we are so engrossed in our struggle with IBD, and other life challenges, that it is hard to see anything else.
But, sometimes, you just have to celebrate the little victories. Sometimes, just making it through the day is a victory in itself.
And know that there are other people walking your same road.
Yes, the struggle is real. But hope, resilience, self-compassion, and a fierce drive to live (and get better) are all real too. And they are good goals to shoot for.
So be gentle with yourself: whatever that means to you. Find people you can open up to – friends, a loved one, a counselor. And know that at least one person out there understands your struggle…but probably many, many more.
