A view inside a womans brain where a small version of herself is curled up sadly

Let's Talk About Mental Health

When we talk about sickle cell disease (SCD), mental health remains a hot topic. I spoke to a mental health advocate about his attitude towards sickle cell awareness. He said something that really hit me: “Andressa, when someone has anxiety or is depressed because that person is in pain all their life, it is a different kind of anxiety than when someone is heartbroken.”

And yes, that makes sense, but I've never compared it that way myself. I spoke to him because I wondered how I, as an SCD advocate, can guide my target group in the right way to seek professional help when I notice that that person is "stuck" for a while.

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I always try to increase my empathic capacity because I really want to help everyone in the best possible way. And no, you can't help everyone. You can't make everyone happy, and not everyone will be happy with you. But I always say, “If I can change one person's life in a positive way, then I'm happy!”

But now, the question still remains: how can we, as sickle cell advocates, support our community in the right way without giving the feeling that you are pushing people in a certain direction?

Benefits of talking to a psychologist when you are in pain

In recent weeks I have had to hear more and more often: “A psychologist can't help me,” “Andressa, I'm not crazy! I HAVE PAIN!"

Advising someone to seek professional help has nothing to do with being mad or not believing they are in pain. Do you know why I advise people to talk to a professional? I have experienced firsthand how effective it is to talk to a psychologist when you are in pain but also when you are not in pain.

During a prolonged pain crisis, my princess was referred to a child psychologist from the same hospital. During a pain crisis, the psychologist did several exercises with her to learn to manage the pain. And at times when she is not in pain, they talk about the acceptance process of SCD and how to deal with daily stress because every day, you have to deal with a situation that makes you excited (positive stress) or maybe sad or insecure (negative stress).

Because you are given different tools at both painful and non-painful moments, you are unconsciously or consciously taught a new lifestyle. Where do you put your attention? How do you deal with it?

Applying the psychologist's tools in life

I was driving the car with my daughter once, and I was concerned that it would tire her out because I knew she had back pain. So I asked her how the pain was going. She said, “Mommy if you ask, it hurts. I don't want to think about it. Can we talk about something else?”

I was shocked, but at the same time, I was also impressed by her reaction. Because I noticed that she used the psychologist's tools very seriously, and that's great.

If you learn at a young age how to approach things “differently,” then I think it will make your life more pleasant. I feel like if you learn to deal with the pain, it's easier than if you fight the pain. Sickle cell disease is part of our lives.

Finding acceptance

We have a choice: we accept it and learn to deal with it, or we don't accept it and don't learn to deal with it. For me, the acceptance process took a very long time, but the moment that I accepted it, everything became easier.

I started to educate myself on SCD. I started educating myself about the different medications and various tests that she has to do per year so that I can ensure that she will later become an adult woman.

Managing mental health and sickle cell disease

Sometimes we might need some help to get to that point where we accept our health condition, which may also mean that we need to talk to a professional. It is always beneficial to seek help when we can't do it by ourselves. I would advise parents to take a look into this because we not only help ourselves as parents, but we are teaching our kids at an early age how to manage their mental health.

Mental health matters. And if you are an adult living with sickle cell disease, try to see a friend when you talk to a professional. We are in this together! You don't have to do this alone.

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