Discussing Bleeding Disorders with a Mental Health or Substance Use Disorder Treatment Facility
Before you discuss your bleeding disorder (BD) with a mental health or substance use disorder treatment facility, contact your BD treatment team. Although it may seem strange to contact your BD treatment team when attempting to access a mental health or substance use disorder treatment facility, they can support you in educating the facility about BD and advocating for equitable access. BD SUMHAC recommends that you refer the mental health or substance use treatment facility to your BD treatment team for any detailed conversations regarding BD.
When making initial contact with a mental health or substance use treatment facility, focus on the primary diagnosis (substance use disorder or mental health), NOT the BD. You are not seeking treatment because of your BD; you are seeking treatment because of your substance use disorder or mental health condition and this should be the focus of the conversation with the facility.
When talking with a facility about your BD, it is important to remember that mental health or substance use disorder treatment facility staff generally do not have a background in medical conditions. They may be uncomfortable with rare conditions, like hemophilia or any other BD. These conditions can sound overwhelming and complex to staff. It is important to be honest, direct, and brief when discussing your condition. Assure them that your condition is stable and easily managed at home through medication. Refer them to your hemophilia treatment center or BD treatment team to answer any additional questions.
If asked about your BD medication, tell them that you are stable on your medication and that you take it at home. Refer them to your hemophilia treatment center or BD treatment team to discuss the details of the infusion or injection.
When Talking with a Mental Health or Substance Use Disorder Treatment Facility
Do
Be honest, direct, and brief.
Refer to the BD as a stable, chronic, and well-managed health condition.
Limit medical terminology.
Suggest that they contact your BD treatment team if they have any questions or concerns.
Let the facility know that your BD team is available to support you during and after your treatment at the mental health or substance use disorder treatment facility.
Do Not
Bring up your BD initially.
Mention IV or injectable medication until asked.
Provide complicated explanations of a BD or focus on complications.
Suggested Language*
“I have a stable, chronic, and well-managed health condition.”
“I have a bleeding disorder that is stable, and I have managed it my whole life through the use of medication. If you have any questions about my medication, please contact my [hemophilia treatment center or bleeding disorder treatment team]”
“I manage my condition [at home or in the community] and my only restriction is that I can’t play high-risk, contact sports.”
“I have a team of providers who have developed an emergency health care plan for me and are available to answer any questions you might have now and during my stay.
“My [hemophilia treatment center or bleeding disorder treatment team] is available to support me while I am in treatment at your facility. I am happy to put you in touch with them. Would you like me to have them call you? Is there any other information you want from my doctor at this time?”
If the facility specifically asks you about your infusion or injection:
If you are able to self-infuse, BD SUMHAC suggests the following language:
“I have had this chronic issue my whole life and have learned to manage my condition with the support of my [hemophilia treatment center or bleeding disorder treatment team].”
“I can independently give myself my medication, just like I do at home, which will be taken in private, only takes about 5 minutes, and can be stored at the facility.”
“I regularly give myself my medication at home as directed by my physician without any medical supervision or assistance.”
If you will require an external provider to give you medication, BD SUMHAC suggests the following language:
“I have a well-controlled medical condition that requires regular treatment that can be given by a provider at the facility. If you do not have a provider who is able to give me my medication, my [hemophilia treatment center or bleeding disorder treatment team] would be happy to work with your medical director to develop a plan of care so that I can stay stable on my medication, just like I do at home.”