I’ve found it hard to find blogs and first person accounts of Behcet’s disease that aren’t just miserable.
Maybe it’s because I’m really lucky and my disease isn’t as bad yet. Maybe it’s because I’m often looking for answers to a very specific problem. Or maybe it’s because I try really hard to stay positive and optimistic and don’t want to weigh myself down with negatives.
Whatever the reason, I don’t normally go looking for Behcet’s blogs, kind of dismissing them altogether. But I’m glad someone showed me this blog, with the fantastic title “Behcet’s (Because House Says It’s Never Lupus).”
Now, at first, you might read some of the posts and be like:
“Farrah, what the heck? She sounds miserable! It’s just horrible symptom after horrible symptom!”
And I’d have to say that yes, you’re right. BUT the one thing that impresses me is that she never loses her sense of humor. Granted, it might show up in sarcastic ways, or in descriptions that might not seem humorous unless you have Behcet’s. However, I find every one of her posts relatable.
Like I said before: I’m lucky that my disease isn’t as bad as others. And I know that. So reading descriptions of awful flares is a good reminder that I’m damn lucky and should quit my bitching. But it’s also a good way to be prepared for the future–just in case.
One post in particular, from back in January, really stood out to me.
She describes how stressful a visit from her mom was. If you know anything about Behcet’s, it f*cking hates stress. It doesn’t matter if it’s stress from something good or something bad; it’ll react the same. It lashes out and forces you into submission–namely feeling so fatigued that you can’t leave your bed.
But when you’re trying to be a good daughter or son and spend adequate time with your parents when they visit…well, it can get complicated.
Her dad, who has lupus, has a better understanding of the limitations of living with a chronic illness. Her mother, on the other hand, does not.
Completely unfeeling, her mother reminded her of many hurtful things during the visit, including:
- the pain in her hands, which she thought at age 10 was arthritis, and it was really growing pains
- her awful periods and large ovarian cysts, which couldn’t have been that painful since her mom has SUCH a high pain tolerance (completely negating the fact that her daughter, who lives in chronic pain, has a ridiculously high pain tolerance)
It’s an awful feeling when people who swear they love you can’t, or won’t, try to understand what you’re going through. I know this first hand. My own mother, who is a medical professional, would always try to convince me I was making a big deal out of nothing.
Whenever I’d try to talk to her about different symptoms or treatments to try and understand them, she was entirely dismissive. When I decided to cut my visit around the holidays short by one day so I could have a day at home to rest and relax before going back to work, she was pissed. I heard those snarky, sarcastic comments for months.
It’s hard enough learning to take care of yourself, especially when you’re just trying to grasp this whole “adulting” thing. And it makes it that much harder when the people you thought would always love and support you, vanish.
And that’s why blogs like this are important. They help you remember that there are people out there who do get it, who do understand, and who do care. It’s just a matter of finding them and never letting go.
