Knowing What to Look for in Your Medical Care
When you are a child, your medical care is guided by your parents and your doctors. Someone else reminds you to take your medicine and schedules your doctor appointments. When you become an adult and stop seeing your pediatrician and pediatric hematologist, these responsibilities become yours to manage. As you get to this transition, work with your pediatrician or hematologist to find an adult care doctor and continue to take good care of yourself.
When you start managing and monitoring sickle cell on your own, make sure you find a hematologist you feel comfortable with. You should feel supported by your doctor. You want someone who you can share all your symptoms and concerns with. 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 you and your sickle cell. Other doctors, such as those in the emergency room, may not understand sickle cell as well since they don’t treat it regularly.
These doctors may believe some of the common misconceptions associated with sickle cell, just like other people. In fact, a study done in 2014 found that about half of patients with sickle cell believed that they had experienced discrimination from the medical community.
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
Some people with sickle cell may seem unemotional, or stoic. Not showing emotion may be a way of dealing with the severe and chronic pain that comes with sickle cell. You’re used to this, after all. This may make others think that you’re not having pain, even when you are, even when it’s really bad.
People with sickle cell often know what pain medicine works for them and even what doses they need. People with sickle cell have chronic pain and are used to managing frequent, acute pain crises. In short, you’re an expert. This may give healthcare providers in the emergency room the false idea that you have a substance abuse issue. Instead, you just know what you need.
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
- Create a “pain plan” (a list of pain medicines that work for you) with your healthcare team
- 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 and your pain plan 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 near you to stay hydrated
Doctors are finding useful ways to use telemedicine for the check-ups that happen in between taking labs or needing to see their patients in person. Virtual visits can be an extremely important tool to help keep you feeling your best.