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How to live your best life despite sickle cell disorder

Can you live your best life with sickle cell disorder? Of course, we can.

It’s no news that I was born with sickle cell disorder. A blood disorder that causes the red blood cells to become misshapen.

The change in shape makes it difficult for the cells to move in the blood vessels which in turns causes different types of pain.

Although growing up, I barely had serious pain that got me admitted but I had other things that caused people with the disorder pain.

If you are familiar with sickle cell disorder, you’d know that majority (not all) of people living with the disorder have certain features. I happen to have some of them.

Due to my cells, I did not grow physically strong as my peers. I grew younger, skinnier and smaller than many of them and this affected my self confidence negatively. It also made me feel bad.

It took until my late teens and early young-adulthood to realize that I had been letting sickle cell disorder get the best of me, I had let it define me.

A lot of people living with sickle cell disorder allow the disorder get define them.

I know it’s difficult but you and I can live our best lives despite sickle cell disorder. You don’t have to lose yourself to the pain. I understand the pain is real but thriving is also real.

“Thriving. That’s fighting… Surviving is barely getting by.”

-Jillian Michaels

Sickle cell disorder might make you feel discouraged about life and have no plans for the future. I understand. But it shouldn’t, you are stronger.

In this post, I am going to share ways that will help you and I live our best life despite sickle cell. These tips will help you live a full and active life and also help you turn your dreams to reality.

Let’s get into it,

Live with sickle cell disorder

8 ways to living your best life with sickle cell disorder

1. Accept the disorder

“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” 

-William James 

I have been living with sickle cell disorder for over 20 years but it is not like I’ve always been comfortable or accepted the fact that I live with the disorder.

My parents always told me that I do not live with it even though they knew I do. So, I grew up in denial and it took me until my late teens before I finally accepted the disorder.

I have realized that acceptance is the first step to living well with sickle cell.

Accepting sickle cell disorder for me has opened my mind to looking for ways to manage it well rather than sorting for ways to find a cure that isn’t there.

Living in denial can cause even more damage to your mental health. Learn to let go of the blame and what people would think of you and accept your life as a warrior.

It would help you start feeling at easy with yourself and help you realize that sickle cell disorder is just part of you.

2. Develop the right mindset

There are basically two types of mindset; the fixed and the growth mindset.

The fixed mindset never sees a way out in something because it is focused on the problem and would always whine and complain about the problem.

I’m always in pain. The government does not care about us. I don’t like my body. I don’t have money and I can’t get a job.

There is always something to complain about for someone with a fixed mind. Don’t be that.

However, someone with growth mindset finds ways to solve a problem, never complain about a problem.

I know it’s hard sometimes to keep that mindset and that is why I wrote this post, ten ways to stay positive with sickle cell disorder. You should read it.

There’s always something positive about every situation. At the end of pain, there’s something worthy.

You are more than sickle cell and with the right mindset which is the growth mindset, you can start learning how you can become a better person and deal with pain purposefully.

3. Honor your limitations

I know you believe you can do everything. That’s okay but you shouldn’t do everything.

You are not supposed to do everything, you are supposed to choose your battles and leave the rest.

See, choosing your battle does not mean you are weak, it means you are human and are wise enough to care for yourself.

Everyone has limitations but as someone with a chronic illness, there are lots of limitations and you should honor them.

You do not have to prove to anyone that you can do it if you are not physically strong enough.

Accept that you have limitations, honor it and ask for help whenever you need one.

I should state that asking for help does not make you weak either, it shows that you value your health and wellbeing and it brings me to the next tip.

4. Seek Support

Support from others is quite important when you live with sickle cell. Everyone needs someone to cheer and push them, people living with sickle cell disorder needs someone too.

Living with sickle cell can be lonely and isolating. This sometimes comes from the fear of being stigmatized but that is not enough reason to withdraw.

You can get support from professionals, fellow warriors, family and trustworthy friends. Just find your own tribe.

living well with sickle cell disorder

5. Turn pain to purpose

Yeah, you read that right. I believe there is purpose in pain.

If you doubt yourself or your ability to turn pain into purpose, you should read the story of Nick Vujicic.

A man born without arms and limbs who does things everyone else does and even better. Nick travels the world preaching the existence of God and his awesomeness.

Or watch this video on Paul Alexander, the man living in iron lung.

Everyone has a purpose, including you and I.

Pain, adversity, struggle can be used in a positive way sometimes. They can be turned into purpose.

If your pain doesn’t kill you, then it is supposed to make you stronger.

6. Set goals

A man without a goal is just a walking dead. He would take whatever life throws at him because he never had a goal for himself.

As someone living with sickle cell disorder, most importantly as humans, you should have long and short term goals. These goals will be the reason you want to get back after a crisis. It will be the reason you would rather not give up on life.

Your long term goals can be as long as twenty years or three years and short term can be as short as weeks or even days.

When you set goals, remember to use the S.M.A.R.T acronym.

Set goals that are Specific, Measurable, Attainable, Relevant and Time-based.

7. Seek knowledge

Don’t ever be okay with what you know. There is so much you can still learn and unlearn.

Luckily, in today’s world, information and knowledge is closer to you than you think. The smartest people in the world have a beginner’s mind, they do not act like they know it all because they do not (no one does), they learn even when they know what’s been taught.

Always have a beginner’s mind.

Drink from the well of good books and search the internet for education. Self-education will help you raise your standard as warrior and bring you a fortune. It will also boost your confidence as human.

8. Love yourself

What is life if you do not love yourself? Self-love is key and as a warrior, your life becomes better when you love yourself. The first step to loving yourself is accepting your limitation and imperfection.

You cannot be perfect and that is okay. Learn how to love yourself and put you and your health first.

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How to live your best life with sickle cell disorder

Conclusion

Living with sickle cell disorder is not a death sentence, you can live with sickle cell and still make good of life.

Don’t let it be the end of the world for you, instead it should a source of inspiration for you to start living your best life.

Start today, start believing in yourself, have a bucket list of things you’d love to do, set goals and smash them.

Nothing is impossible with the right mindset, it all begins and ends with mindset. If you want to live your life fully as someone living with sickle cell, you need to have the right mindset. Train your mind to see opportunities in situations whether good or bad.

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Abayomi

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