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, schedules your doctor appointments, asks you if you have a water bottle for hydration and a sweater in case it gets cold, etc. When you become an adult and stop seeing your pediatrician and pediatric hematologist, these responsibilities become yours to manage. As you approach this transition, work with your pediatrician or hematologist and their staff to understand all of your medical care responsibilities so you can 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 OK to switch doctors. The most important thing is that you keep up your medical care. You should take whatever steps that will help you accomplish this.
Overcoming Misconceptions and Stigmas in Your Care
Your primary care doctor and hematologist should understand you and your Sickle Cell because they care for you on a regular basis. Sometimes other doctors, such as those in the emergency room, may not understand Sickle Cell as well since they don’t specialize in it or treat it on a regular basis.
This may mean that these doctors could be affected by some of the common misconceptions and stigmas associated with Sickle Cell – just like other people. In fact, a study conducted in 2014 found that about half of patients with Sickle Cell felt that they had experienced discrimination from the medical community.
There are two stigmas or misconceptions you are most likely to encounter in the Emergency Room: 1) that you’re not in that much pain or 2) that you are 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 accompanies Sickle Cell. This may lead others to think that a person with Sickle Cell is not experiencing pain even when they are.
People with Sickle Cell often know what pain medication works for them and even what doses are needed. People with Sickle Cell experience chronic pain and have experience managing frequent, acute pain crises. This may give providers in the emergency room the false impression that they are affected by substance abuse, rather than simply being knowledgeable about what they need.
There are several things you can do to proactively 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” (which is a list of pain medications that work for you) with your healthcare team
- If you have pain, document the symptoms and location of the pain before and during attempts to manage it. If you’re in too much pain to do this, write them down after the pain goes away. This journal can help you when you talk to your doctor
- Find ways that help to reduce and/or manage your pain before it becomes an emergency
- Carry a document with you at all times that summarizes previous hospitalizations or emergency room visits. Bring this document and your “pain plan” with you when talking to your doctor
- Bring friends, family, or people in your community with you to your doctor or emergency room visit for support and to help advocate for your care. It can be hard to advocate for yourself when you’re in intense pain
- Have the emergency room doctor work with your regular hematologist or healthcare team in support of your care