How I Get Through Tough Days
Last updated: November 2023
Humor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to make my friends laugh.
For instance, I recently went to see The Last Voyage of the Demeter with friends. In the movie, one of the hapless victims of a Dracula hickey is given a crude 1800s blood transfusion to treat the wound.
"Ah, the good ol' days when blood products were safe," I wanted to say as I figuratively bit my tongue.
This or That
Do you use humor to cope?
Now, by and large – blood products have been safe for decades now. The crack is a knock on the sloppy shop that was blood safety in the 1970s and 1980s, and it would have gotten a laugh.
But, of course, there are days when living with a bleeding disorder is no laughing matter. When the jokes aren't at the ready, these are the things I try to remember.
Figuring out what is really bothering me
As sunny as my writing disposition is, it only tells some of the story. I've also been diagnosed with depression. That occurred about a decade ago, around the same time that I was being more proactive about hemophilia. It's funny how taking care of one thing makes room for you to see other areas that should receive some attention.
My initial reaction to a surprise bleed can be very telling. If I'm still cursing 5 minutes after I banged my knee on the coffee table, then I ain't cursin' about that coffee table no more. As I gather my hemophilia-treating items – the butterfly needle, the tourniquet, gauze pads, a band-aid, alcohol rubs, etc – I use the moment to calm myself.
By the time I've treated my bleed and slapped a band-aid on, I've usually figured out what is really bothering me. Of course, with depression, sometimes there isn't an answer, which is also an answer: "Ah, just having one of those days."
Now, do I need to bump into something to figure that out? Not always, thankfully!
Being honest with my support system
Another thing that really helps is having a supportive partner. If I'm a Grumpy Gus, as our beloved Rose on Golden Girls says, Gwenn often notices before I do. One of the best things I've learned to do – and it's still not automatic by a long stretch – is just simply admit that I'm having a bad day.
That used to be preceded by me saying, "I'm fine," about a dozen half-hearted times when I'm clearly not fine. Waiting silently for the clouds to lift or trying to solve the mystery J.B. Fletcher-style isn't the best route, but for many years, it was just my go-to response.
Just admitting a day is tough helps so much. Verbally acknowledging the bad times - in real time - gives Gwenn the opportunity to know where I'm at. Suddenly, I don't feel alone in the blues or that I'm dragging her down. Opening up always expedites a return to a more joyful disposition, or even just a neutral one.
Like treating a bleed, treating the blues means focusing on the issue at hand. And relying on my support system. I know how it feels to be able to help Gwenn when life starts throwing the hard stuff her way.
Getting to a better tomorrow
Ultimately, I'm so happy and thankful for my life. We all have adversity. I know my bad days probably look different than yours. But, certainly, we all have them.
I believe that the more acceptance, compassion, and patience we have for ourselves on those bad days helps put us in a better position to tend to our rare diseases more harmonious, which helps us get to a better tomorrow. Usually, those are just right around the corner, and knowing that is soothing, even when it feels like everything else seems to be going wrong.
How do you feel about your support system?