A Day in the Life of a Sickle Cell Advocate

As a sickle cell advocate, you are sometimes confronted with very difficult situations. For a few months, I also do volunteer work for a hospital that focuses exclusively on adults. I have partnered with the adult hematologist to work on improving the care of adult sickle cell patients. Fortunately, I often have conversations with adult patients which makes it easier for me to empathize when it comes to the experience, frustrations, and above all incomprehension.

A patient's voice

There are a few things I want to explain. It's so important that we as sickle cell advocates make our voices heard when the patient can't. And sometimes the patient doesn't even know you're his or her voice. In this specific case, we have a Whatsapp group with warriors and the hematologist. We want to keep contact accessible so the patients can be in contact with each other, and can ask questions of the hematologist or the patient advocate - me.

Sometimes it's more comfortable to be able to share your frustrations with someone who doesn't need too many words to understand you. Before we add them to the group, we first ask if they want to be a part of it. Some want it and others don't. For those who do want it, this is a "safe" and reliable group.

Making connections

If necessary, I have one-on-one conversations with the warriors to find out how I can contribute to simplifying practical matters or maybe helping to provide them with information.

It may sound cliché, but very often some kind of link is missing between the patient, the hospital, and external actors such as work, school, family, etc. In those cases, I try to be that link. And no, I'm not a social worker, but I can make connections and explain what is needed.

My experience

I had a case where I was concerned about both the patient and the nurses. The nurses are therefore specially trained to care for patients with sickle cell disease. But I noticed from their responsiveness that they couldn't always understand the frustrations of the patients. Empathy is the first step, but you also have to realize what a patient goes through on a daily basis.

Adult patients have been living with a constant fear of pain for at least 20+ years; when they are in pain they feel powerless, frustrated, and usually misunderstood. Because the first thing they encounter is a kind of judgmental situation where the nurses usually have the idea that they are looking for morphine or other strong pain medications and are therefore in the hospital. I've heard this so many times from other advocates and patients, but in the past few months, I've experienced for myself exactly how it works.

Challenges for an advocate

My challenge right now is to make both the nurse and the specialist understand how frustrating it is for a sickle cell patient and their family to go through this on a daily basis.

Luckily, as a mother, I also have moments when I feel frustrated or powerless because I see my child in pain and can't do anything myself to take the pain away from her. I don't even want to think about my own child! How will she feel? Thanks to my own experiences it is easier to help adult patients and to give the medical team insights about living with sickle cell disease in a sober way.

I will soon have training for the medical team where we will share experiences with each other and I can educate them in the "non-medical" area. When I talk about “non-medical” areas I'm talking about the practicalities for adults living with sickle cell disease.

Important considerations

What should the medical team consider when an adult patient goes to the hospital?

• A patient only comes to the hospital when it is no longer possible to control the pain at home. So the moment he or she arrives at the hospital, the first thing he or she wants is help as soon as possible to get rid of the pain.
• Patients usually feel misunderstood and sad. And also long for someone who understands them or at least listens to them. Don't make the patient feel like you know everything better, but realize that the patient has been living with sickle cell disease for 20+ years and is trying everything to get better or reduce the pain.
• When a patient talks irritably out of frustration, don't take it personally. I always give this example: If someone stabbed you with a knife in a specific place for 3 days, it would drive you crazy, wouldn't it? Remember that this is the experience of the pain the patient has when they come to the hospital. The pain is so intense that the patient can sometimes express himself with irritation.
• Sickle cell patients are called warriors. There's a very good reason for that. They don't see themselves as victims! They are warriors who live for years in intense pain and yet find a way to live a normal life. Treat the warriors with respect, for many of us would not be able to handle the pain they are in.