Freedom To Be A Crescent
For some reason, it is so hard for people living with sickle cell disease (SCD) to speak freely or live freely.
What are some of the things that prevent sickle cell warriors from being free?
Sometimes, this happens out of care and love for us. Other times, people only belittle us because of our condition.
Society expects people living with sickle cell to be quiet, reserved, and calm, but some SCD patients are rather outspoken.
Most times, this combination of being sick and outspoken forms a contrast, which can make our condition sometimes difficult to understand and believe for others. SCD is an unseen illness, which also contributes to this contrast.
People who might think they are “looking out” for people living with SCD may only be suppressing our potential.
Moving out to discover myself
When I moved out, my dad didn’t like the idea because of the risks involved. I, on the other hand, wanted the space to learn how to cope in such situations without depending on anyone.
It was in my isolation and independence that I discovered that the weather - cold or hot - could trigger a crisis. I also discovered that treating mild crises on time can help reduce the risk of serious crises. During this time, I also took my modeling seriously, taught myself to be more open about my sick state, manage myself, know my limits, explore and discover more about myself.
Most sickle cell patients want the space and freedom to be themselves, learn more about themselves and their condition, explore possibilities, and feel like everyone else.
How can you support people with sickle cell if you don't have the disease?
Instead of judging every move we make, you could join hands and help. Hold our hands as we test the waters and give us the chance and space to feel like a normal person.
Be as present as possible
If you know someone living with sickle cell, be there for them.
Some sickle cell patients may make very strange choices, but those choices may give them a sense of value. Please don’t take that away from us.
The struggle we experience
We experience a struggle for freedom to speak, be happy, be human, be appreciated, and be loved.
We didn’t choose to be born like this but have to live with it for the rest of our lives. Instead of making it more difficult than it already is, reach out, extend love, try to help, encourage, be friends with, and contribute to our growth and lives.
It is still unclear to me why people still bully and stigmatize sickle cell patients. It is amazing how people who do not even have the disease talk about it as if it were a death sentence.
Has it ever occurred to you that reactions are different when it comes to people living with sickle cell? It feels like healthy people or people without sickle cell have more rights than sick or special people.
Questions and comments like “How can you be sick but dye your hair?" "Are you really sure you are sick?" or "it’s just a cover-up, so you do not have to work as hard as everyone else."
I am not defined by sickle cell
Well, here I am, fun, outspoken, very loud, and full of life. I don’t care if it is misinterpreted because I am not defined by my diagnosis.
Sickle cell has no right to control my life. I live with Sickle cell and not for sickle cell.
Even when visiting the hospital
Sometimes, going to the ER and hospitals really pisses me off. Instead of attending to our needs, health officials will rather judge our appearance or make comparisons in an attempt to make fun of us.
One day, I was rushed to the hospital in crisis. Instead of helping me manage the pain, the nurses were asking questions about my nails.
One of the nurses asked: "You’re a sickler, and you’re wearing nails? Why won’t you fall sick? You don’t know yourself.”
Living with an invisible illness
Some people would sometimes make it seem as if every crisis was my fault and blame the pain on my carelessness, even if it was caused by other things out of my control (like the weather, emotions, sudden climate changes, etc.)
Some effects of sickle cell because it is an unseen disease: our complaints are not taken seriously most of the time. Sometimes, even the doctors belittle the intensity of pain we feel. They often disregard our pain ratings thinking we exaggerate because we want the meds or a “spoilt child.”
Advocating for yourself
A doctor in the ER once said to me, “you are not in pain, you just want the drugs."
I don’t think it is wrong for someone to let their doctor know that there is no improvement in their health and suggest medication if that could help better. I also don’t think it warrants talk of addiction, but unfortunately, this is often the case when it comes to people living with sickle cell.
It looks like we are even denied the right to rate our own pain without prejudice.
Be in charge of your life
I just want to tell all the warriors out there, don’t allow anyone to intimidate you for any reason. Having sickle cell does not mean you cannot be yourself, do what you love, experience life, be fashionable or pretty. Just like every other person, we have the right to live our lives to the fullest. Never give the prophet of doom the chance to feed on your self-esteem and make you question your worth.
Your life does not have to be miserable, unkept, or boring just because you have special needs from sickle cell.
You are amazing
Sickle cell patients are amazing, needed, beautiful/handsome, warriors, and go-getters. Everyone has the right to look good, slay, be crazy, live life, chase dreams and move at our own pace. Get that doctorate, travel, and explore if it helps. Guide your mental sanity and break free from all prejudice.
Live life to the fullest
Life is a beautiful thing, don’t give it a chance to slip away.
I have never allowed people to project their fears onto me, limit or bottle me up. Go out there and fly beyond the horizons. You are special. When tired, confused, and frustrated, try to take a break and refresh your mind. You could also meditate, travel, explore and try something new. Whatever you do, never give up on yourself.
Have you taken our Person Before Patient Survey?