Emotional effects of sickle cell anemia
Living With Sickle Cell

Emotional effects of sickle cell anemia: How to deal with them

May is mental health awareness month so let’s talk about the emotional effects of sickle cell anemia. This post was written by Akinbode Seyi, she also lives with sickle cell.

I know living with sickle cell disease can be hard sometimes.  Apart from the physical stress, there’s mental/emotional stress which can cause things like insecurities, anxiety, low self-esteem, depression, fear, etc.

How do you manage the emotional effects of sickle cell disease?

We’ve been taught how to take care of ourselves physically; drink water, avoid stress, and so on, but no one taught us how to take care of ourselves mentally/emotionally.

It wasn’t discussed.

There isn’t any guide to it and there were few to no articles on how we can manage sickle cell emotionally. We just had to figure it out ourselves along the way.

Personally, I had to figure out what work for me and what wouldn’t. It certainly wasn’t a piece of cake.

Dealing with sickle cell anemia and mental health issues

Living life and managing your mental health as a person with no health issues isn’t easy. Now imagine managing your mental health as a person with sickle cell, it is a lot more difficult.

You have to try twice as hard. You have to put twice the effort into things that are easy for others, and you still have to go through other difficult life experiences. If sickle cell disease is not your only condition, it will just be a rollercoaster.

There will be highs and lows. It takes time to get to a point where it doesn’t bother you anymore and you’re able to balance it all.

Even when it seems like you’ve balanced it, you would still meet some insensitive people who will make you doubt yourself.

Sickle cell and its emotional effects

Navigating my emotional health and dealing with sickle cell wasn’t easy. It wasn’t easy balancing it and every other aspect of my life, especially the relationship part.

You might struggle with dealing with people’s ignorant hurtful comments and having to take extra precautions before doing certain things.

There’s also the fact that you will be discriminated against. People would doubt your pain.

You have to also come to terms with the fact that you have to try twice as hard to engage in certain activities.

My childhood

I grew up in a loving family but no matter how tight-knit it was I still had this sense of being alone.

I was pretty confident about every other thing in my life except when it came to my health.

There was a feeling of guilt because as kids I thought my sisters would think I was being treated as the favorite because I required more attention.

Then if I was termed ‘sickler’ or given the famous pity looks or someone said something insensitive relating to my health (and a lot of people do this thing where they talk like it’s your fault for getting sick), I began tearing up because I didn’t know how to explain what it means to live with sickle cell disease.

It wasn’t like my life was over or I was just going to drop dead but it made me angry and sad at the unfairness of it all.  It probably didn’t help that I didn’t speak up about how I felt but I didn’t know how to.

Growing up

I heard a lot of ‘sickle cell patients die young, they don’t live up to age 20’ from authority figures and it incited fear in me growing up.

Yeah, there are severe cases of sickle cell disease which can result in some complications but a lot of them are treatable, and giving half information didn’t help me as a kid.

The hearsays and misinformation didn’t help one bit as I became an adult. I became closed off and feared giving all of myself. I saw myself as a burden.

It made me insecure and instead of expressing myself and how I felt about things, I kept it in.

It’s not so much that I couldn’t speak up. But I didn’t want to because I didn’t want to be seen as too much or as a burden.

I would have liked not to grow up with all of that. But hearing the ‘sickle cell die young’ constantly was the root.

I felt what was the point of living and being in pain if I was still going to die at a very young age.

Finally talking about it

It wasn’t until I opened up to my dad one day that he said it was because they were ignorant.

I didn’t totally believe him because the ‘hearsay’ still went on for a while.

Until I was old enough and understood the power of doing my own research. It also helped that my sister was a medical student then.

So, I know it’s a lot but how did I get to a stable place despite all the emotional effects of sickle cell that I went through? I kid you not it wasn’t easy.

I still have my days but for the most part, it’s a balance.

Maybe a kid growing up somewhere or even an adult is facing something similar or even dealing with the worse emotional effect of sickle cell anemia, I hope this helps them know that they are not alone and don’t have to go through it alone.

13 tips to help you deal with the emotional effects of sickle cell anemia

I am going to share a few tips on how to manage yourself emotionally

1. Develop a relationship with your doctor. There’s nothing better than having a doctor you feel comfortable with. One who understands your health (someone sensitive) to share your concerns so you can get help.

2. Go for counseling in your school or workplace. Especially if you’re having feelings of recurrent sadness, anxiety, insecurity, feeling of extreme lows, etc. (Read: How to deal with depression from sickle cell)

3. Don’t shut yourself out or keep everything to yourself, avoid brooding

4. Do things that make you happy and give you fun. Go out, mingle with friends, and find things that make you laugh. (Read: How to live your best life despite sickle cell disorder)

5. Talk to your support system. That could be a friend you’re close to or your family. It could even be a support group. Share your feelings and struggles, don’t pretend to be fine when you’re obviously not. (Read: Benefits of joining a support group for sickle cell)

6. Avoid living in your head all the time. I know it can be fun to sometimes wander in your imaginations but don’t be so used to it that you forget what it’s like to live in the real world.

7. Think positive thoughts, I know it can be hard but it will help create a positive outlook on life. If puppies make you happy or food lol think about it.

8. Do not look at your condition as a death sentence. Accept that this is who you are. You probably won’t be able to do things like others but it doesn’t make your life over.

9. Don’t look at your sickle cell disease as a hindrance. This is probably the hardest because it sometimes is a hindrance. Try not to focus so much on the limitations, just know that you just have to be extra cautious to achieve your goals. It doesn’t make it unattainable.

10. Exercise. Apart from it helping us maintain a good healthy lifestyle, exercise can also help reduce mental stress. Although stay hydrated during exercise and engage in mindfulness exercises such as yoga and meditation.

11. Whenever you feel sad try not to do things that threaten your emotional stability. You can watch comedies, binge eat (just not to the point you get stomach upset), or sleep until you address the issue. But I recommend not hiding for too long and addressing the issue early enough.

12. Avoid putting yourself in situations that will compromise your mental health constantly.

13. Ask for help. This is very important. Don’t be afraid to ask for help when you need it, don’t be afraid to speak up and tell how bad it is.

These few tips can go a long way in helping.

Conclusion on the emotional effects of sickle cell anemia

Even with sickle cell disease, we can achieve whatever we put our minds to. Yeah, you have to deal with something that not everybody has to but at the end of the day, you’re still here.

So if you’re able to go through your day, then know that it’s one thing you have to deal with. Don’t let it be everything and the deciding factor for you.

Go out there, take charge of your life, and don’t let sickle cell disease control you instead control it.

I hope I have been able to help. Share your thoughts and struggles, and how you were able to battle them and let’s all learn from each other.

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