By Shelby Smoak, Ph.D.
For almost fifteen years of my career, I taught communications classes, ten of which were at the University of North Carolina at Greensboro. The goal was always to get students to learn the tools they would need to communicate effectively in their lives and especially in their jobs. However, the failures were always the same and can usually be summed up as this: Too much talking!
As a member of the bleeding disorder community, I know our community, and I know that many of you reading this right now have likely been given the gift of gab. We talk, we talk, and we talk. Talking, however, is not communicating.
“The great enemy of communication,” says journalist and sociologist William H. Whyte, “is the illusion of it.” We may think because we are talking we are being heard and are communicating effectively, but that isn’t always true.
Effective communication is about being understood. It is also about listening. When it comes to having a chronic illness like a bleeding disorder, communicating effectively can increase positive outcomes in health and work. Remaining quiet can undermine a positive outcome; filling your mouth with words without making a point confuses a situation and delays a solution.
Being an effective communicator about your bleeding disorder is not an easy task. Health is personal. Sharing with others is often difficult, but crafting good strategies for talking about your condition with your physician and employer only benefits you.
Let’s look at some strategies to help you become more effective at communicating about your bleeding disorder in the physician’s office and at work.
Communicating with Your Physician:
- Start by recognizing that your care or your child’s care is a team effort between you and the physician. They have the expertise; you have the experience of the condition. When at an HTC for a visit, I treat it as a coffee meeting (but without the coffee), and we are not here to talk about my latest favorite book but about my favorite subject: ME! Treating your visits like a conversation, which does include a lot of listening, goes a long way to having a successful visit.
- Don’t save the most significant question for the end. You may feel working up to the “important” issue is best, but time may run out before you get there. Starting with your main issue also lets the doctor know it’s a priority.
- Write down the things you want to talk about. Stick to 3 or 4 main points you want to discuss. Some of you may have a plethora of things to discuss, but you need to prioritize those issues ahead of time and whittle them down for your visit. The night before a clinic appointment, I usually ask myself, “Should we discuss my ankle bleed, that knee bleed three months ago, the joint pain in my elbow, the crackling in my right ankle, the heel lifts I need, the increase in blown veins, etc.” I must decide what is most important and relay that to my physician.
- Provide good records, especially regarding infusions. An infusion log like the MicroHealth system helps capture infusion information (the MicroHealth app is available for iPhone, iPad and Android: Click here.)
- Provide a list of all your medications and doses.
- Revisit the past year and consider ongoing issues before your appointment.
- Be clear about what you need. What do you want to walk away with? A new script? A new therapy? A new treatment plan? An orthopedic appointment? No changes?
- Listen attentively and respect the physician’s knowledge. This is where you must stop talking and must not interrupt unless asked a question.
- Be positive and thank the physician for their time. With a chronic illness, it can often be hard to remain optimistic, but this may be more important to healing than you think. A recent study in the Journal of American Geriatrics Society found that optimism and positive thinking increased a person’s life by fifteen percent!1
- Leave the appointment with a clear understanding of what you need to do, fill a prescription, call another physician, or keep doing what you’ve been doing!
It may happen sometimes, however, that your physician fails to address your concerns satisfactorily. Lack of time, often due to increased patient loads and limited clinic hours, is usually the culprit. A study published in the Journal of General Internal Medicine found that in 67% of patient/physician office visits studied, patients had an average of 11 seconds to speak before being interrupted.2
If you feel you are not being heard by your doctor, here are some things you can do.3
Stay calm. Getting angry at a situation rarely has a positive outcome.
Be sure to speak up and vocalize your concerns. It’s easier for your doctor to brush past a concern if the importance of it or the description is not fully expressed. For example, be clear with explaining the level of pain you’re experiencing using specific words such as “sharp,” or “dull but consistent.” Describe your pain on a 1-10 scale and be ready to say when the pain is at its worst, what makes it better, etc.
Ask specific questions that require a full answer. For example, is the problem serious? What may have led to the problem? Will it go away on its own, or does it need follow-up care? Ask for more detail or for a simpler explanation.
Bring someone with you to your appointment. If you find yourself becoming frustrated or confused, your person can take notes and step in to ask questions or ask for clarification.
If you find you are still not making headway, consider making statements like, “This issue is significant, and it’s important to me to know that you understand this,” or “I know you are very busy, but I’m not confident that I understand the resolution.”
Perhaps the best course of action would be to email your dissatisfaction and concerns afterwards. Writing gives you a chance to express your unhappiness with being heard, and it also gives the physician an opportunity to respond when they may have more time.
If you still feel you are not being heard, it’s perfectly reasonable to consider another physician for your care.
Communicating with an Employer
Should you tell your employer about your hemophilia? This is a tough question and one I have wrestled with a few times. In most cases, I did share because it is hard for me to conceal my limp or in the South, where short-sleeved shirts frequently abound, to hide the blue needle marks on my arms. I guess I am a drug user, but not “that kind,” and so I wanted to dispel any rumors that could arrive and negatively impact my employment. Yet, I did not typically do this during the interview. Often, I waited for a month or so after being hired when I felt more secure in my job and felt I had a boss I could trust.
Either way, there is no right or wrong answer when sharing your health information with an employer. How and when to talk with your employer about your condition can be tricky. Here are some things to know:
You are not required to reveal your medical condition to your employer. This is always a personal choice you make based on a host of personal reasons.
Confiding in your work friends can often be a safe place to get support. Many a co-worker covered for me when I ran late due to an unexpected morning infusion.
The HR department is there to support you and can serve as a go-between.
If you talk to your employer, frame the conversation about how the condition will or will not impact your day-to-day work.
Your condition may be invisible, though hiding it may not always be best. Honesty about your bleeding disorder can benefit you. Disclosing your condition will also establish expectations between you and the employer.
Disclosing protects you. If you divulge your health condition and are later terminated for performance reasons, a case to the Equal Employment Opportunity Commission (EEOC) may be submitted. If you are fired but did not disclose, there is no case.
While disclosure via email can work, it may be better as an in-person conversation. When it comes to my bleeding disorder, I have found that talking about it to an employer goes much further than writing to them about it. Conversation opens the door for them to ask questions and work with you on solutions for job situations that could arise.
Don’t give into a fear of being stigmatized.
In closing, I’ll lean into a poet I much admire, Robert Frost, who said: “Half the world is composed of people who have something to say and can’t, and the other half who have nothing to say and keep on saying it.”
If you can’t talk about your bleeding disorder, learn how to. And if you are talking about your bleeding disorder, be sure you are understood!
If you would like to learn more about Effective Communication, please request the BioMatrix Education Team pamphlet, “The Keys to Effective Communication About Your Chronic Illness,” which includes content on schools and more tips on messaging and body language. We also offer a community education program on the same topic. Email us at education@biomatrixsprx.com.
Patient Navigation Program
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
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References
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2. (2024, March 5). Common variable immunodeficiency - Symptoms and causes - Mayo Clinic. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/common-variable-immunodeficiency/symptoms-causes/syc-20355821
3. Common variable immune deficiency (CVID) | Immune Deficiency Foundation. (n.d.). https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/common-variable-immune-deficiency-cvid#:~:text=The%20usual%20presenting%20features%20of,condition%20termed%20bronchiectasis%2C%20may%20develop.
4. Cunningham-Rundles C. Treatment and Prognosis of Common Variable Immunodeficiency. https://www.uptodate.com/contents/treatment-and-prognosis-of-common-variable-immunodeficiency
5. (2019). Common Variable Immunodeficiency (CVID). National Institute of Allergy and Infectious Diseases. https://www.niaid.nih.gov/diseases-conditions/common-variable-immunodeficiency-cvid
