I'm now two years post-diagnosis. I've learned a lot. There is still much to learn. One thing I've learned is . . .
Don't be alone.
Human beings are hard-wired to be social, some more than others. (I'm a less than others.) We like to meet, congregate, share, communicate, cry, laugh, mentor, advise, and enjoy doing just about everything more when with someone else.
Once the internet and social media came along, being social became easier and more far-reaching, thus resulting in oversharing, otherwise known as TMI (too much information).
But somewhere in our hard-wire is a glitch. When confronting or dealing with difficult things, instead of sharing and communicating with others, most of us withdraw . . . we shrink into our lives, our walls, and ourselves, and sometimes we sink deep.
It is often a self-defense mechanism. But against what?
The unknown. The grief, the loss, the "What nows? What ifs?" and "Whys?" The often unwanted changes that happen in our lives.
I'm not talking just about ulcerative colitis. As you know, there are difficulties and losses of all kinds, with autoimmune disease struggles being just one.
My first non-health update post was in August, 2022, titled, "Are You Getting Over it? (Who do you tell?)"
I was only six months past my UC diagnosis, still reeling with the
idea of it and still trying to learn and figure everything out. In that post, I wrote about who we may want to bring into our UC circle of those who know. I want to add to that.
And so, I return to the beginning of this post. One thing I've learned is . . .
Don't be alone.
We don't need everyone to know about our UC, but we do need SOME PEOPLE. I put them in three categories:
1. Those we trust with our hearts. Loved ones and friends. People we can talk to about our condition, that we can contact any time we need to laugh at the sometimes ridiculousness of our situation, or cry from our grief and pain.
2. Other UC patients. Words cannot describe the comfort, validation, and hope you can feel from talking with someone who is going/has gone through the same thing as you, no matter what it is. Someone that you can just complain about the unfairness of it all and they will nod their heads with genuine understanding. This can be in person or on forums, threads, or websites on the internet. You will learn the most from these people.
3. Those who your UC may affect. This can include employer, work associates, or other family and friends. If you're staying at a friend's house for a few days and there is a chance you might have an accident, that friend really needs to know what's going on. If you're in remission and not having problems or symptoms, then there's no reason for the friend to know.
Last year, a local university held a "Life After Loss" conference for the first time, for those struggling with losing a loved one. One of the attendees was a mother who had lost a five year old child in 1995, and three other children in 2005, 2009, and 2011, due to disabilities. She wrote an article about the event and said hearing others who went through the same thing as her made her feel less alone. She described the tears shed by many at the conference, including her own. However, she also said this:
"But I also felt lifted and lightened because, I believe, a burden shared is a burden eased."
I hope you have people that can walk with you on your journey, be it UC or something else. I hope you can walk with them on their journey as well. I hope you do not push away those who want to help! I hope you know that letting others in your world for a time, and being in theirs when you can, is what sharing and lifting is all about.
Fight the glitch!
A burden shared is a burden eased.
After all, we're hard-wired for it.
Quotes:
“One of the most important things you can do on this earth is to let people know they are not alone.” -
"If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope. No one is useless in this world who lightens the burdens of another. There is no exercise better for the heart than reaching down and lifting people up." - Charles Dickens
The Power of Community When Battling Chronic Illness
© Colitis Senioritis 2024
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