How to maintain a healthy romantic relationship with sickle cell disease

Because today is recognized as Valentine’s Day or “love day” across much of the globe, I want to explore the difficulties that can arise within romantic relationships when one partner has sickle cell disease.

(Fun fact: Many parts of the Eastern Orthodox Church celebrate Saint Valentine on July 6 and July 30 — so now you have an excuse for two additional Valentine’s celebrations!)

Sickle cell disease can often cause intense pain, sickle cell crises, frequent hospitalizations, and chronic fatigue. Of course, symptoms differ from patient to patient, but they can all significantly disrupt the normal rhythm of life. For couples, this can result in derailed plans, interrupted intimacy, and constant unpredictability.

Sickle cell’s impact on a relationship goes beyond the physical symptoms. The emotional toll of a chronic, debilitating illness and the strain of caring for a partner can test even the strongest of bonds. It’s important to remember that all relationships will face hurdles, even without illness. But when you add sickle cell into the equation, the usual relationship struggles can be magnified.

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The fatigue that accompanies sickle cell disease can make it difficult to participate fully and consistently in activities, share responsibilities, and meet emotional needs. Physical pain and the need to rest can lead to feelings of isolation or inadequacy, for both the person with the illness and their partner.

In addition, sickle cell crises are unpredictable. Plans may need to be canceled or altered, which can cause anxiety, frustration, or disappointment. For the healthy partner, this unpredictability can feel like a constant burden, while the sick partner may struggle with feelings of guilt or helplessness. The mental and emotional toll of chronic illness can result in feelings of depression, anxiety, or even anger, which can strain a relationship. This is especially true if the healthy partner feels like they’re constantly in a caregiving role, or if the sick partner struggles with deep fears and insecurities.

Maintaining a strong, loving connection

While chronic illness can pose significant challenges to relationships, there are strategies to maintain a healthy, supportive, and loving connection.

Open, honest, and regular communication is essential. Being open about your emotions, needs, and concerns can help prevent misunderstandings. It’s important for both partners to express how they’re feeling, whether in regards to the illness itself, the relationship, or outside stressors. Scheduling check-ins or “relationship talks” can provide a safe space for this.

An environment underpinned by empathy and understanding is imperative. For the person with sickle cell disease, this means sharing the realities of the condition with your partner so that they understand what you’re going through. For the healthy partner, it’s about recognizing the emotional and physical toll the disease takes and offering comfort and support without judgment.

It’s important to focus on what is within our control. We can’t control our illness, but we can control our approach to it. It’s vital to set realistic expectations and be flexible about adjusting those expectations as needed. Life with sickle cell disease can be unpredictable, and sometimes plans must change. Be willing to adapt and avoid placing undue pressure on yourself or your partner.

Both partners should prioritize both self-care and partner care. For the person with sickle cell, this means managing your health, attending medical appointments, and listening to your body’s needs. For the healthy partner, it’s crucial to take care of yourself, too — whether through physical activity, emotional outlets, or seeking support from others.

Chronic illness can bring up difficult emotions, and it’s OK to ask for help. Consider seeking professional counseling or joining a support group for either patients or their partners. This provides a space for you to vent frustrations, get advice, and learn coping mechanisms. Caring for both yourself and your partner produces an environment where both individuals can flourish and have their unique needs met.

Living with sickle cell disease and navigating the complexities of a relationship isn’t easy, but it’s far from impossible. With patience, communication, and empathy, couples can weather the challenges together. Remember, chronic illness may bring obstacles, but it doesn’t define the love, connection, and strength that can exist in a relationship. Together, you can create a balance that honors your love for each other, notwithstanding the reality of the illness.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.