How Parents of Children with Sickle Cell Disease Can Find Intimacy and Connection

I'm the mother of a child with sickle cell disease (SCD), and a few weeks ago while chatting with another sickle cell parent, she asked me about sickle cell and intimacy. I appreciated her question because I once struggled knowing I had sickle cell trait and being intimate with my husband.

At this point, I have been married for 17 years, but in the early years after we found out, while I was expecting that we were trait carriers, physically connecting was hard for us. This is probably one of the most transparent posts that I've written, but if it helps at least one family, then sharing about how parents of children with sickle cell can find intimacy and connection is worth it.

Breaking down barriers

Over the years, my husband and I had to learn to connect without fear. Let's be candid. As a parent of a child with this condition, it is imperative to understand the impact it can have on your life and your family. The physical symptoms of the disease, such as chronic pain, fatigue, and frequent hospitalizations, can be challenging to manage and can significantly impact your emotional wellbeing.

However, handling the highs and lows of being a caretaker is much easier when you have a strong, supportive relationship. Open, honest communication and physical intimacy are important foundational characteristics of a relationship.

Realities of parenting a child with SCD

Parenting a child with sickle cell disease can be emotionally taxing because it can feel like those in our families and inner circles don't fully understand our lives. Then, coping with the demands of caring for a sick child, while also trying to maintain a sense of normalcy for the rest of the family can be overwhelming.

Over the years, I learned that parents must prioritize taking care of themselves, both physically and emotionally, in order to be able to provide the best care possible for their child or children. As a result of trial and error, I was determined to learn how to have a healthy intimate balance in order to keep my relationship strong, grounded, and satisfied.

Challenges of family planning for carriers

Family planning can be particularly challenging for parents of children with sickle cell disease. Because the disease is genetic, there is a risk of passing it on to future children. This can leave parents feeling unsure about whether or not to have more children and, if so, how to minimize the risk of passing on the disease.

To be fully transparent, my husband and I chose not to have any more children. Thankfully, we have twins, so my child living with Hemoglobin SS has a sibling who does not have the disease. They support each other and have forged a strong bond.

To make informed decisions about family planning, it is important that parents have access to accurate information about the risks and options available to them. Genetic counseling can be a valuable resource for parents in this situation. A genetic counselor can help parents understand their chance of passing on SCD and provide information on options like pre-implantation genetic diagnosis and adoption. There is no judgment in deciding whether or not to have more children with your spouse if you are both trait carriers. Parents are entirely free to make their own informed decisions.

Importance of genetic counseling

Genetic counseling can also be helpful for parents of children with SCD who are considering having additional children. A genetic counselor can help parents understand the risks and options available to them, and can provide support as they make important decisions about their family's future.

Parents need to remember that having a child with SCD is not their fault and that they are not alone in their struggles. Seeking support, whether from a genetic counselor, a support group, or a mental health professional, can help manage the emotional toll of the disease.

Once a week, I connect with my therapist to discuss my concerns. I also share highlights in my life and my family's lives. Therapy helps me handle all the rigors of being a caregiver and full-time sickle cell advocate.

Navigating the emotional rollercoaster

Parenting a child with sickle cell disease can be an emotional rollercoaster. Fear and anxiety about the future, coupled with hope for a cure or effective treatment, can be overwhelming. Once you get past the fear, it can be full of hope, promise, and joy while watching your child learn how to navigate life in a healthy way.

Most importantly, parents must find healthy ways to cope with all the emotions of parenting a child with a chronic condition. In fact, to maintain their wellbeing and provide the best possible care for their child, they have to learn how to relax and work together.

One way to manage fear and anxiety is to stay informed about the latest research and treatments for SCD. This can provide a sense of hope and help parents feel more empowered in their role as advocates for their children.

It is also important for parents to take care of themselves physically and emotionally. This may involve seeking support from friends and family, participating in self-care activities, or seeking professional help from a mental health provider.

Impact of SCD on relationships and intimacy

Sickle cell disease can have a significant impact on relationships and intimacy. The demands of caring for a sick child and the physical and emotional toll of the disease can make it difficult for couples to find time for each other and maintain a strong connection.

It is important for couples to communicate openly about their feelings and needs and to find creative ways to stay connected. This may involve scheduling regular date nights, finding ways to share the responsibilities of caring for their child or seeking support from a couples counselor.

Five regular practices to find intimacy and connection:

• Prioritize date night. It can be within your home over a candle-lit dinner with some soft music.
• Listen to what's on each other's hearts. Communication that is free and from a place of love will keep couples feeling heard and respected.
• Make sure both parents know they can lean on each other. There is no greater joy than knowing someone else has your back unconditionally.
• Try to connect physically at least once a week. Physical intimacy should be joyous, pleasurable, and fun.
• Express your love often. Love is a verb, so show and tell your spouse so it's clear how much you both love each other. The actions of expressing love will be different for every relationship, but identify how your partner receives love and be creative when filling their love bucket.

Connection & intimacy strategies

Finding connection and intimacy as a couple while parenting a child with sickle cell can be challenging, but it is possible. One strategy is to prioritize self-care, both individually and as a couple. This may involve setting aside time for exercise, hobbies, or other activities that bring you joy and help you feel connected.

Another strategy is to seek support from friends and family. Letting others know what you are going through and asking for help can provide a sense of relief and make it easier to find time for each other.

Finally, it is important for couples to communicate openly and honestly about their feelings, needs, and desires. This may involve seeking support from a couples counselor, who can help facilitate productive conversations and provide guidance for navigating the challenges of parenting a child with sickle cell disease.

Community support for parents of warriors

Community support can be invaluable for parents of children with sickle cell. Support groups, online forums, and other resources can provide a sense of connection and understanding, and can also provide valuable information and resources.

It is important for parents to seek out these resources and to connect with others who are going through similar experiences. This can provide a sense of validation and support and can also help parents feel more empowered as advocates for their children.

Coping strategies for caregivers

Coping with the demands of parenting a child with sickle cell disease can be challenging, but some strategies can help. One strategy is to prioritize self-care, both physically and emotionally. This may involve seeking support from friends and family, engaging in self-care activities, or seeking professional help from a mental health provider.

Another strategy is to stay informed about the latest research and treatments for sickle cell. This can provide a sense of hope and empowerment and help parents feel more confident in their role as advocates for their children.

Finally, parents need to seek support from others who are going through similar experiences. Support groups, online forums, and other resources can provide a sense of connection and understanding and can also provide valuable information and resources.

Healthcare providers can support parents

Healthcare providers play an important role in supporting parents of children with sickle cell disease. Providers can provide information about the disease, its management, and its impact on families. They can also provide emotional support and connect families with resources and support groups.

It is important for parents to communicate openly with their healthcare providers about their needs, concerns, and questions. Providers can work with parents to develop a comprehensive care plan that addresses both the physical and emotional needs of the child and their family.

Hope and resilience in the face of sickle cell

Parenting a child with sickle cell can be challenging, but it is also an opportunity to demonstrate incredible strength, resilience, and love. By prioritizing self-care, seeking support, and staying informed about the latest research and treatments, parents can provide the best possible care for their child while also maintaining their own wellbeing and finding connection and intimacy as a couple.

Remember, you are not alone in your journey. There are resources, support groups, and healthcare providers who are here to help you navigate the challenges of parenting a child with sickle cell. Together, we can break down barriers and find hope and resilience in the face of this challenging condition.

Next steps

I assure you that parents of children with sickle cell disease can find intimacy and connection they just need to make it a priority on their daily to-do list. From one parent to another, reach out to others for support, ask for help babysitting, or do other tasks. Talk to your healthcare provider, seek out support groups, and prioritize self-care. Remember, you are not alone.