Living with a bleeding disorder often means making difficult decisions about when to push forward and when to slow down. Yet for many people, taking a break can come with an unexpected emotional burden: guilt.
Whether it’s guilt about missing work, canceling plans, or asking for help, these feelings can make it harder to prioritize the rest and recovery your body needs. Caregivers may experience their own guilt, from feeling they should be doing more to worrying about the challenges their loved one faces.
To better understand why guilt is so common among people living with bleeding disorders, and their families — and why rest should be viewed as part of care — we spoke with Jessica Wulf, LMSW, a social worker at Western New York BloodCare in Buffalo and the Mary M. Gooley Hemophilia Center in Rochester.
Why do so many people with bleeding disorders feel guilty about slowing down or resting?
When you have any chronic illness but especially a bleeding disorder, there is this need to push through pain, bleeds, and any inconvenience.
And then there’s guilt that comes with having complications and having to rest, which is an essential piece of managing bleeds. But in today’s society, rest can feel like something that you shouldn’t be doing.
I think society often equates productivity with worth. We always have to be doing something. And so, when there is a need to rest or not do as much, that can be equated to laziness.
Sometimes rest can feel undeserved or unnecessary. Anyone who has a chronic illness, especially those with “invisible symptoms” — things that people can’t see — there is this inherent feeling that it’s not real, it’s not really happening.
Also, there is an expectation of: I have a bleed, but I’m OK. It’s a part of my life. There is benefit to that, but there is also a negative aspect — pushing yourself too far and not acknowledging the difficulty and the pain that goes with the disease.
What can happen when guilt keeps people from listening to their bodies?
The feeling of guilt really blooms into negative self-talk. Over time, it makes you feel bad about yourself, that you’re letting yourself and other people down.
If you don’t have a good support system, it can be detrimental. It can manifest into depression and anxiety, into serious mental health issues that need to be addressed.
If you feel guilty for not doing something, you might do it and push yourself too far, leading to a bleed or other complication, and then you’re back where you started.
How do you help people think differently about the guilt that comes with resting?
The body needs rest. It’s not a nice-to-have.
For people with bleeding disorders, especially when they have an irritated bleed or a hematoma or bruising, the best thing they can do is rest, because the body needs to recover.
So much of it is reprogramming how we view rest and recovery. A lot of times it feels like it needs to be earned. But you don’t need to earn rest.
It’s a part of what we need as humans.
What are some healthy boundaries that can help people reduce guilt and support long-term well-being?
One amazing thing about the bleeding disorders population is that they know their bodies so well.
Be conscientious of how you’re feeling, have an honest conversation with yourself, do a full-body check, and realize: What am I capable of doing today? If you’re not feeling that today is the best day to do something, maybe take that thing off your list for the day.
If it’s something that you really need to do but you know that doing it is going to harm you, where can you lean on your support system to help?
Remind yourself that you’re a human with a rare and difficult disease. Sometimes, you’re just going to do the small things you need to do to get through the day. That doesn’t mean you’re a failure or you did anything wrong.
What would you say to someone who feels guilty about needing help, slowing down, or simply taking a break?
A big part of what I do is just holding space and acknowledging that you are going to feel bad about things sometimes, and what you’re feeling is normal and OK. But let’s figure out ways to improve that and to give you the tools to do it yourself.
If you don’t understand what you’re feeling and going through, how can you address it? I try to get to the crux of what the deeper issue is, but I’m also validating what you’re feeling.
As a society, we’re programmed to do so many things at once and to be plugged in all the time and be productive. We are allowed to pause and find fulfillment in ways other than just running around.
I think that pausing can feel like you’re doing something wrong, but that’s not reality. Life should be enjoyed — and sometimes people feel they need permission to do that. So, I tell that to a lot of people: This is me giving you permission to just sit and enjoy, to relax, to take it all in.