You are not alone — and you are not doing anything wrong.
Many people in the bleeding disorders community experience anxiety, depression, or challenges with substance use. In fact, mental health concerns are more common among people with bleeding disorders than in the general population. These experiences are not a personal failure; they are a common and understandable response to living with a chronic, lifelong condition.

It’s also important to name something many people feel but rarely say out loud: talking with a provider about mental health or substance use can be hard and even scary. You may worry about being judged, misunderstood, or that sharing these concerns could affect your care. Those fears are real and they make sense. You still deserve care that supports your whole health, including your mental and emotional well-being.

While many people with bleeding disorders are able to access outpatient mental health care, inpatient or residential behavioral health treatment can sometimes be more difficult to obtain. That’s why it can be helpful to not wait for a crisis. Talking early, often, and honestly with your bleeding disorder treatment team about mental health or substance use concerns can help you explore options, plan ahead, and reduce barriers if higher levels of care are ever needed.

Opening up takes courage. If you share concerns and don’t feel heard right away, that can be discouraging and it may make you want to stop trying. If that happens, please know this: a lack of response does not mean your concerns aren’t valid or important, and it does not mean you did anything wrong.

Sometimes it takes more than one conversation – or the involvement of a different team member – for concerns to be fully understood and addressed. Many people in the bleeding disorders community have experienced this when advocating for their physical health, and the same is often true for mental health and substance use care. Needing to keep asking is not a failure; it’s often part of getting the right support.

If you encounter barriers to higher levels of care, don’t give up. Support and advocacy are available. BD SUMHAC has tools and resources to help you and your providers work toward access to the treatment you need and deserve. Reaching out, and continuing the conversation, even when it feels uncomfortable, is a strong and important step toward caring for your whole health.

“I want to talk about something important to my overall health. I’ve been having some mental health and/or substance use concerns, and I want to make sure we’re addressing them as part of my bleeding disorder care.”

“I know many people with bleeding disorders struggle with this, and I don’t want to wait until things get worse.”

“I’ve learned that anxiety, depression, and substance use challenges are more common in people with bleeding disorders, and that helps me feel less alone.”

“For me, this has been showing up as [anxiety / low mood / stress / changes in sleep / increased substance use / feeling overwhelmed].”

“I also understand that while outpatient mental health care is often accessible, inpatient or residential treatment can sometimes be harder for people with bleeding disorders to access. Because of that, I want to talk early and honestly with you so we can plan ahead and avoid a crisis.”

“Can we talk through what treatment options might be appropriate for me right now?”

“I’d like your help understanding options like outpatient therapy or medication management, and what signs would suggest I might need a higher level of support.”

“If I ever run into barriers accessing care, would you be willing to help coordinate or advocate on my behalf?”

“Knowing I have your support makes it easier to ask for help.”

“Thank you for listening and for caring about my whole health — not just my bleeding disorder.”

“Having this conversation helps me feel more supported and hopeful.”

If you don’t feel heard right away

If the response you get doesn’t feel helpful or complete, it’s okay to speak up again. You might try saying:

• “I don’t feel like we’ve fully addressed this yet, and it’s really important to me.”

• “This is affecting my day-to-day life, and I’m hoping we can talk more about next steps.”

• “Is there someone else on the team — like a social worker, nurse coordinator, or mental health provider — I could speak with about this?”

• “Would it be okay to revisit this at our next visit or follow up by message?”

If continuing the conversation in the moment feels hard, you can also:

• Share your concerns in writing

• Ask to schedule a separate visit focused on mental health or substance use

• Bring a trusted advocate (a family member, friend, or community advocate) to help support the conversation

If you need to ask more than once, that does not mean you’re doing something wrong. Many people in the bleeding disorders community have had to advocate persistently for their physical health, and mental health and substance use care is no different. You deserve to be heard — and it’s okay to keep asking until you are.

Share these materials with your referring provider and your bleeding disorder treatment team:

• Background on people with bleeding disorders being denied access to behavioral health facilities: Start here if your provider is unfamiliar with the issue of people with bleeding disorders being denied access to behavioral health facilities.

• The BD SUMHAC Provider Toolkit: This toolkit is a comprehensive guide to assist providers in referring people with bleeding disorders to behavioral health facilities and can help them to facilitate admission on your behalf.