Knowing What To Look For In Your Medical Care

Whether you’re already managing your sickle cell or making the transition to adult care, make sure you find a hematologist you feel comfortable with. You should feel supported by your doctor. You want someone with whom you can share all your symptoms and concerns. If you don’t feel this way, it’s okay to switch doctors. The most important thing is that you keep up your medical care. 

Overcoming Misconceptions And Stigmas In Your Care

Your primary care doctor and hematologist should understand sickle cell and your unique needs. Other doctors, such as those in the emergency room, may not always understand sickle cell as well since they don’t treat it regularly.

There are two stigmas or misconceptions you may be likely to face in the emergency room:

  • That you’re not in that much pain
  • That you’re just seeking drugs

There are several things you can do to advocate for your care if you are faced with misconceptions and stigmas. Here are some tips: 

  • Stay up-to-date with your medical care and keep yourself informed.
  • Come prepared with a list of any medications you take so your healthcare team is aware.
  • If you have pain, document the symptoms and location of the pain and your efforts to manage it. This journal can help you when you talk with your healthcare provider.
  • Find ways to reduce and/or manage your pain before it becomes an emergency.
  • Carry a document with you that summarizes your previous hospitalizations or emergency room visits. Bring this document with you when you visit your healthcare provider.
  • Bring friends, family, or people in your community with you when you visit any healthcare provider. It can help to have others speak for you when you’re in intense pain.
  • Sickle cell is a painful disease. However, being proactive about your care can help you manage your symptoms and disease. Have the emergency room doctor work with your regular hematologist or healthcare team.

Utilizing Telemedicine To Stay On Top Of Your Care

Virtual healthcare visits and telemedicine have become more and more common in modern day. Utilizing telemedicine in combination with in-person doctor’s visits has become a convenient and efficient way to stay on top of your sickle cell care.

To best prepare for virtual visits with your doctor, you should try to:

  • Find a quiet area without distractions
  • Log on early in case of technical difficulties
  • Prepare questions for the visit so that you know what to ask your doctor
  • Have a pen and paper to take notes
  • Make sure to have your medications nearby in case your doctor asks about them
  • Have water nearby to stay hydrated

Doctors are finding useful ways to leverage telemedicine for the check-ups in between taking labs or for visits in which they don’t need to see their patients in person. Virtual visits can be an extremely important tool to help keep you feeling your best.


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November 2023.

This website is intended for U.S. residents.

The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider.