Struggles of Being an Advocate

Have you ever wondered what it is like to be a sickle cell advocate? I will explain a little about what that feels like but from a personal point of view.

Who is an advocate?

According to the Merriam-Webster dictionary, an advocate is one who defends or maintains a cause or proposal.

In this context, a sickle cell advocate is one who understands, educates, and helps defend sickle cell disease and the people living with it.

Notice how the above paragraph states who a sickle cell advocate is as someone who understands first. There is no advocacy without a proper understanding of the cause that you want to advocate for.

How I became a sickle cell advocate

It is one thing to live with sickle cell and it is another to advocate for sickle cell and people living with it. Some people intentionally chose the path of advocacy, maybe because they want to speak up for themselves or want to support a loved one living with sickle cell.

Me, I stumbled upon this path. It was accidental.

I never thought of becoming a sickle cell advocate. It all started with my social media accounts. All I wanted to do was share my thoughts and experience of living with sickle cell. However, I didn't do this the conventional way; I used short poems and interesting write-ups.

My writings started getting seen by warriors that did not only love what I wrote but also could relate. Gradually, talking about my experience became something I did more often, not only using writing but also my images. Then the journey transitioned into working and collaborating with sickle cell organizations offline.

Struggles of being a sickle cell advocate

Now, back to the main reason you're here. I'm going to share some of the things I struggle with as a sickle cell advocate starting with number one which is the struggle to represent every part of me.

• Struggle to represent me

  There is a part of me that wants to advocate and talk about sickle cell but there is also a part of me that does not want to be known for sickle cell. There is a part that wants to just write and do amazing things that have nothing to do with sickle cell, however, it feels like that part is not represented at all.

  I don't want to be the poster boy for sickle cell (that is not a bad thing) yet I want to talk about it. It's like I'm torn between 2 worlds.

  If you have seen the series 'The Sex lives of College Girls', my life is somewhat similar to Kimberly who is scared of coming out as a lesbian because she's scared people will label her as a lesbian and start seeing her differently even though she's the same person.

• Making new relationships

  I struggle with making new relationships as an advocate mostly because being a sickle cell advocate can shape that relationship. Perhaps, it is me just overthinking it but I feel like knowing that I am a sickle cell advocate can determine the type of conversations that we have.

  So, I try to put my personality forward first. If you cannot deal with my personality, then there is no need for us to talk about sickle cell.

• Self-care

  Being an advocate for me also means looking out for others living with sickle cell and helping them as much or as little as I can.

  Do you know what this means?

  It means that I might forget to cater to my own needs. It takes a conscious effort to remind myself that I cannot look out for everyone and that caring for myself is a top priority.

  It is easy to tell people to drink lots of water, visit their hematologist regularly, take their drugs religiously, or try to be more social but am I taking my own advice? It's a struggle.

  There is a saying that you cannot pour from an empty cup so I try to give myself as much compassion and empathy as I give to others in the community.

Identity

Don't get me wrong, I love what I do as a sickle cell advocate. I love to talk to people about sickle cell and advise them as much as I can but I don't want that to be my only identity.