Well, I was diagnosed even before I was born, but I will say to that self is that you are definitely a fighter and you can get through anything and that you are probably one of the strongest people. Living with a chronic disease inherently makes you strong and stand in your strength and really just keep the faith and don’t allow your illness to deter you from your goals.

The advice I would give them is you have a long journey ahead of you, but don’t give up, continue being persistent and continue being resilient and continue being strong. I would describe to that person how I feel now is there, now living a good life that I’ve built for myself and sickle cell complications that hasn’t stopped my life or the quality therefore.

Oh boy, if I could travel back in time, I would yell at myself. I would tell myself eat better, listen to the doctor, take your medicine, to not compare myself to other people, that I’m going through this on my own terms. I don’t have to overwhelm myself with certain things just to be like my peers. I would also tell myself that not all doctors have the best intentions for the patient because I have been treated very, very badly. I would be more outspoken. I would tell myself to speak out. It’s okay. These are doctors. You have opinions. You have your thoughts and your feelings. And don’t let anyone step all over you. Don’t let anyone treat you bad. I would tell that person how I feel now. I would tell them I feel good, but I feel that I could have done much better. I don’t have to be competing with anyone. I would just be so mad at myself. Everything happens for a reason, but I would just be so upset. I don’t think I could get over it. But now I have to learn from my mistakes. That unfortunately … Time travel does not exist. Anyway, that’s okay.

Basically, if I could go back in time to my younger years when I was like seven and eight and when the crisis was just that a great standpoint in my life, I would definitely tell myself, “Hey, drink a lot of fluids, stay hydrated, make sure you take your medicine.” And that was a lacking point for me. I guess, as a child, during those primary stages of life, you don’t really get to, I don’t say, I guess, adhere to a certain protocol. I mean, it’s something I just kind of listened to based off what my parents said, but it was hard to keep up with that schedule so I would definitely go back in time and say, “Had you did this, you could have prevented this crisis.” Definitely, I would have loved to tell myself, sorry “Drink more fluids and try to stay away from foods with chemicals.” Yeah, that’s it.

The advice that I would give to the person that I was when my loved one was first diagnosed was the advice that I actually did follow, which was not to panic. Take each day as it comes. There will be hard times but there will also be a lot of times that are not difficult, and there will be challenges but not every day will be challenging. So the most important piece of advice would be to tell them not to panic. How I feel now is that, that is the advice that I have followed since receiving my loved one’s diagnosis. We have taken each day as it comes and learnt more about the condition as time has gone by. We have not always gone with the textbook definition of what was going to happen or what may happen because each person is an individual and the condition affects each person individually in their own way.

So when I was diagnosed with this, I was actually born with it. So I really never knew how it felt to be “normal.” But what I would tell the little girl in me, who was always sick, depressed, didn’t have the sickle cell, I got made fun of for having sickle cell, is just to be yourself. Be unique. God didn’t make any mistakes.

I think for one of the advice, if I were able to go back and tell my parents or my aunt or the baby me about how I feel, I think one of the things I would tell them is to be themselves. Because I find that one of the biggest problems of hard growing up is trying to live up to expectations. So the person has a chronic disease, sometimes you worry that, “I cannot miss school every week.” So, you force yourself to go to school even when you’re not really feeling well. I’ll tell them to be themselves, but not really trying to give in to other people’s expectations of like trying to go to school. You have to go to school, but if they don’t feel well to, I mean, stay at home. One of the things I’d probably tell them is to listen to their body, to take any triggers that their body tells them very seriously, and make sure that they understand how their body feels. Because that’s one of the ways that’s probably helping me now in terms of, I wish I had known that earlier in terms of listening to my body. If I get any slight pain, and slight discomfort, I know that this is an indicator that something’s going to happen. So those are the two key important things that I’ll tell them.

If I was to meet my loved one, I would advise her to just be patient with me, that there’ll be hard days. And she just has to continue to love me like she already does. And really there’s no really advice I would give her that I didn’t give her when we first met. But I would just tell her to know that I love her no matter what. And that’s it.

If I could go back in time, I would tell my younger self to be more cautious when it comes to my diet, to eat properly and choose better, I guess, health choices, possibly become vegan. Definitely stay well hydrated and just to enjoy life to the fullest extent while you are young, because when you get older, you get a lot more complications involved.

I was only three months old at the time of my first diagnosis. But if I could go back in time and tell my little three month old self that it’s going to be a long, painful road ahead. And you just have to follow the medical advice to try to live a normal life. It is very hard and it’s very painful, but you have your moments or days where you feel pretty good.

I would just tell my younger self when I was diagnosed as a child, to listen to my parents and stay in active with the treatment plans. My family was really diligent. My father was diligent to reach out to doctors when I was sick and also to anticipate when I had to go to the hospital and make sure that doctors followed through on pain management and fluids and really staying on top of it because a lot of patients fall through the cracks, especially ones that have had strokes and things like that. There’s a lot of medical bias, unfortunately, with this disease. I would also tell myself to stay on top of staying fit and active because those are things, as I got older, the energy and the activity that I used to have in my youth, I mean, everyone says it, as you get older, your body just isn’t the same. Same with anyone without a chronic illness but when you have a chronic illness being sick, eating properly, which is something I tried to do, that becomes an issue and also just making sure that you stay on top of medical issues outside of the chronic illness, such as dental and vision. I’ve had a lot of dental issues because of the medicines I take with sickle cell can degrade your teeth and that’s a whole ‘nother cost that is not something you would think of when you’re younger and you have the dental care and everything like that. You need to stay on top of it. But I would just encourage him to continue doing what he was doing. I did go to school. I think that had I known how much healthcare I would need as an older person with this disease, definitely would have made sure to go into a trade that I know I would be financially independent and also I would have made sure just to see the world and travel as much as you can while you’re healthy. I did get to do that, but I wish I had even done more just to live every day to the fullest.

This question is definitely a question that hit home and really touches on a deep issue that I struggle with, my mom and I. So back when I was younger and I was first diagnosed, I would hug my mom really tight and let her know that everything was going to be okay and that she’s doing the best she can. And I’ve tried on multiple occasions to describe to her how I feel now or to get her to open up and describe to me what it was like raising a child with sickle cell disease. And now I know that for myself because my son also has the disease. So it’s, I feel like if anything, we would have been able to relate. But it takes… It’s definitely difficult. I would just… I don’t know. I would definitely describe to the person, let’s say in a case where I have someone who was willing to accept what I had to say, I would definitely to describe to them, you know, thank you for all that you’ve done. You did the best you could. Look here. It gets better as the years go on. And there are other treatment options out there. So, don’t give up hope. Definitely don’t give up hope and keep pushing. Because you’re doing a great job.

If I can travel back in time, I would actually be more sympathetic to my daughter’s condition. I actually ended up struggling with postpartum after finding out my daughter actually had sickle cell. I struggle with knowing how to actually deal with sickle cell. So I would travel back in time and actually hope I’d be a lot wiser and more strength minded, positive minded regarding the condition and what actually sickle cell is. And what advice I would give actually to my daughter or her dad would actually be us having that general information of what sickle cell is and how it will actually affect not only my daughter, who has it, but how it affects us as her parents mentally. And I would actually develop a positive, centered type of friendship with others whose children actually battle the same type of condition due to my daughter having SC is totally different than someone that actually has SS. Our conditions are just sometimes a little different.

I would tell my former self you have a medical condition, so you can’t do what everybody else does. You can’t drink. You’re not supposed to smoke. You can’t try any kind of illegal drugs or legal drugs either. What other people your age are doing, you just can’t do it. So, just know you’re different. Just try to start early with a better lifestyle, so when you get older, you can maintain the lifestyle. You might not think exercise is important when you’re younger. But if you get in a routine when you’re younger, when you’re older, it will be a cakewalk, and it will greatly affect your health for the better.

If I could go back and tell my two year old self the adventures and journeys I would have to deal with, I would tell myself to just prepare yourself for a lot of pain, prepare yourself for doctors not believing your pain, prepare yourself to miss out on friends’ birthdays or going different places. I would just prepare myself with all the challenges that I was going to face as an adult living with sickle cell, and even as a child.