A question for the Sickle Cell Disease Community

Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?

Answers from the Community

Sickle cell disease impacts my day-to-day life in the biggest part that it is unpredictable and that I could be, so to speak, asymptomatic and be feeling great one minute and then the next minute be dealing with excruciating pain that debilitates me from being able to do what I need to do throughout the day.

My condition, which is sickle cell disease type SS, impacts my day-to-day life by having excruciating pain and extreme fatigue throughout the day. Some days it’s hard for me to get out of bed due to the pain that I experience. The frustrations and challenges I experience are the extreme fatigue. I could sleep about 12 hours and still feel extremely tired and have no energy. Just makes it hard to work, or study, or spend time with family and loved ones. I’ve taken a B12 supplement and try to limit my daily activity. Just try to fight through the fatigue.

My day to day is my crisis are unexpected. They come and go as they please. Frustrations, are trying to attend college and I’ve gotten sick in the middle of the semester and had to drop and all that hard work that I did is gone. I had to learn that I’m not the average college student or normally would take four classes, trying to catch up with my peers and eventually getting sick and dropping out and then having to start over from the beginning. I’ve learned to not take as many classes. It drives me crazy. But because I love learning, I want to be in the environment with my peers. I’ve missed so much school, I was not able to go to high school and I just really miss that social connection with people that I’ve not had. And just people not understanding why I get sick or people canceling me. I really don’t have a lot of friends. I mean, I feel like it’s just encompassed my whole life and it just kind of… I just can’t help… It’s just me, I talk about it so much. When you hang out with your friends, you’re hearing everybody talk about this and that and, “Oh, what’s the different talking about? She’s sick again?” And just being like a loner, it’s frustrating. I just had to kind of accept that maybe people don’t like me. I kind of just had to take… Just kind of deal with it. I don’t know what else to do. Cause it’s kind of… Accept that I don’t have a lot of people that I can call like that. I’m sorry, but I just have to. And then I have to take care of my stress levels, dress appropriately for the weather. The weather does affect me, stress effects me. Doing little things, like having a humidifier, something with essential oils that kind of calm me down. When I feel like I’m in a crisis, call someone, call my Mom, call my sister. Those are the people that have been in my life since the beginning. And then when I talk to people to get my brain off of it, I feel like it does help my crisis get better. I kind of had to adjust with making little changes like that. I’m not putting myself in situations where I overwhelm myself. And those are my frustrations and my challenges. Okay.

Hi. Sickle cell has impacted my life tremendously. Basically, just getting up every morning with pain and suffering a crisis, especially during this COVID time, has had a great impact on my life. I have not been able to really go to work as often as I would. Usually when under a crisis, it’s hard to walk because you have blood clots surrounding every part of your body and not enough oxygen. Treatments or resolutions to that would be basically just having to drink a lot of water. Following my doctor’s orders to take the prescribed medication of hydroxyurea four times a day, which is 500 milligrams. Following that strict regimen. Drinking plenty of fluids, especially in this hot summer time. It’s very important, so that is what I’ve been doing in regards to that.

I would say that my loved one’s condition impacts our day to day life, because a lot of activities, outings, or events have to be scheduled around the particular conditions of her health at any given time. In order to adjust to the challenges that that presents, we always try to alleviate, or stave off any health issues from arising, by making sure that she is always well-hydrated, well-rested and that we have taken into account any weather conditions that she may face, which could impact her condition.

Some of the challenges are always being in pain. Being very fatigued, lethargic, not being able to do a lot of the things. Some of the things that I’ve tried to use to cope with it is taking vitamins or exercising, or just trying to get up and not allow myself to just sit all the time. So, just constantly keeping myself busy. Also, the weather affects it too. If it’s rainy or if it’s too hot, then you go into crisis.

So, living with sickle cell disease is quite challenging because often at times I make my problems for the day, then out of the blue, I encounter another problem I’m not able to continue to do what I had planned to do. That’s very frustrating because I’m not able to live and enjoy my life fully. There are times when the weather becomes extremely hot, extremely cold. I can’t help that. I can’t enjoy the sun to go out in summertime. It’s really hard to enjoy that sun because I worry that the extreme heat will trigger my crisis. So again, it’s very challenging in terms of being a student and being able to cope with work and all these unplanned pains coming and be able to look that make me not able to meet my work expectations or school expectations. That’s one of the biggest challenges that I have dealing with sickle cell disease. But also another thing is the several complications that show up in my eyes sometimes get issues. Sometime I get chronic pain that doesn’t go away that becomes an issue because if I take the pain meds every day it becomes really hard for me to do everything I want to do because of the chronic pain that I’m living with. That’s one of the key, biggest challenges that I have and one of the biggest frustrating factors that I have. How am I trying to cope? I try to drink as much as I can, have my pain meds at hand. I try to rest as much as I can, but sometimes work and school requirements I’m not able to do that, but I do my best in terms of trying to stay in shape and not worry so much because all those things often would affect my wellbeing.

Every day, me and my loved one literally we go through everything and I appreciate my loved one. We literally have to get up in the morning. I take so long in the shower or in the toilet because it’s hard for me to get up and I’m in pain. She gets the kids’ breakfast ready, she gets all their food ready. She feeds them while I’m still laying down, trying to get myself right. She would get me breakfast in order for me to be able to use my medication. And then after I use my medication, I’m able to start my day. She usually let the dogs out and I stay with the kids inside. She prepares the lunch and pretty much I just try to hang around and help with whatever I can in the house. But that’s mostly our day.

I have sickle cell anemia and my condition has affected me negatively. I’ve had a stroke in November. I’ve been diagnosed with stage three kidney disease. Iron overload. I have a lot of antibodies in my blood, so it’s difficult for them to match me when I get a blood transfusion. And I have to get blood transfusions on a monthly basis because I can’t maintain my hemoglobin. And my hemoglobin, being so low, has affected my energy level. I cannot do much of anything. I’m exhausted all the time. I’m tired. I just want to sleep. It’s hard to me to get any daily tasks completed.

The challenges I face every day is not having the energy to spend time and play outside with my three year old. Sometimes I’m just too tired to do what he wants to do. Some days I can’t even get out of bed. To adjust these challenges, I’ve started eating healthier and going to bed earlier and taking breaks throughout the day to try to help with my fatigue.

Yes, my condition, which is sickle cell disease, affects my daily living in that I am not able to go out and go to work at a location, like a office every day. I’m mostly at home, I have to work from home because I don’t have a lot of energy, and also because I’m often in a lot of considerable pain. So, that really definitely impacts my life because I mean, it affects the choices of career, and has been responsible for me being underemployed or have unemployment being diagnosed with a disability, and permanently disabled in 2008, I believe, so when I was 28, which is pretty young. But, I still do part-time work and things like that, but it’s just not as much as I would have liked to. Also, it entails me taking lots of medications that sometimes cause drowsiness. And so, right now, I haven’t been able to drive in the last two years or so because I was diagnosed with a breathing condition in addition to that. So, I’ve just been on a lot of different types of medications. So, sickle cell disease outside of just being painful, it can be socially challenging to maintain a social life, and also a work employment life, and then take care of your body. And also with the lack of doctors right now, I don’t currently have a doctor for my illness. I have to see a nurse practitioner, which is okay, but if we had a doctor then there would be a little bit more caregiving, and they also have problems sometimes with scheduling appointments and following up. So right now, it’s just a little, it’s stressful financially, actually, because your income is very much affected by what type of jobs you can have. Right now, also with COVID going on, that we are more susceptible since we have underlying conditions such as sickle cell disease. We really can’t afford to get sick or any other illnesses, especially with lungs. I have a lung condition. So yeah, it definitely impacts me on a daily basis and really is the cause of a lot of stress for financial reasons. Luckily I live with a family member, who I’m able to pay rent to. But yeah, it would be much more facilitated even when I was working at home with computers and things like that. So, it’s been an adjustment and has been a couple of setbacks as far as achieving your goals.

My sickle cell disease impacts my day-to-day life, I guess, in all aspects, really. In determining how I’m going to keep myself either warm or cool that day. So, I don’t overheat or I don’t get too cool and cause myself to go into crisis. So, it definitely impacts my day from when I first get up in the morning to when I go to sleep, throughout my day, while I’m working at work, I do have difficulties or troubles that I may run into. If pain arises out of nowhere, that’ll definitely affect my day-to-day life. And, then when it comes to being a parent, my main job, it definitely affects my day-to-day life because I’m not able to, I guess, be rough and rowdy with my kids all the time and play with them and being present, because that definitely is a challenge when it comes to dealing with sickle cell disease, you have to look into the daily challenges that come with parenting trying not to be too tired, but I still have to make dinner and I have to help with homework. And, it’s just giving myself time and letting myself know it’s okay and to be patient with myself. That’s my biggest thing. That’s the frustration or difficulties that I faced is being patient with myself, knowing that, I may need a little extra time. So yeah, that definitely some of the challenges that I experience and how I guess, adjust to these challenges is this, like I just said, just being patient with myself and letting me know that, it’s okay to take your time and you’ll eventually get your things done just like anyone else would.

My daughter’s condition has impacted her and my life, basically due to her not having a lot of energy to partake in a lot of sports and activities with a lot of associates of hers or friends, which that actually has even decreased in me being able to find anyone to actually babysit her anytime that I want to actually do anything myself due to her condition with sickle cell. Oftentimes associates, friends are intimidated by her disease. Due to them lacking of knowledge about it, they kind of steer away from volunteering or wanting to actually watch her or supervise her. It has, like I stated before, it also has impacted her ability to partake in a lot of activities with her peers. And things that we’ve done to kind of adjust things are oftentimes I will limit myself in actually going out with friends, socializing in different community settings. Those are some of the things that we have attempted to adjust, and oftentimes I find myself educating the friends, associates of mine regarding what sickle cell is and how it actually effects my daughter on a daily basis.

With sickle cell, different things cause pain. So the weather could cause pain or temperature could cause pain. Or if you get tired, you could get pain. So have to adjust where you have to take your jacket or something to keep you cool. You can’t get in too cold water. So if you going to the beach or a pool, you have to make sure that it’s heated or a certain temperature. You can’t be somewhere for too long if you don’t have pain medicine because you might be hurting.

I have sickle cell disease, and living with a chronic illness that causes excruciating pain every single day impacts my ability to function, to work a full time job. Sickle cell patients, we have issues in access, of access of care when in the ER, we’re often labeled as drug addicts or drug seekers, so we’re very cautious when we have pain crises. When we go into the ER, if physicians are actually going to believe us or give us the correct amount of pain medicine that we require to control our crisis. Also with COVID, it’s very difficult just going to the hospital because your family, they’re not allowed to stay with you. So it’s just, it’s very much so a struggle in the day to day of trying to maintain your body and your health living with sickle cell disease.