Living with sickle cell disease comes with a great deal of challenges including maintaining and keeping healthy relationships including familial, friendly, and romantic relationships. Relationships with SCD are especially challenging because of the emotional toll the condition has on our well-being, and the shame that we can feel because of the disease. This feeling of shame can often hold us back and keep us from communicating honestly and openly with potential partners.
As a sickle cell patient myself, I have dealt with many challenges in the realm of managing relationships. As a young girl, I often found myself trying to hide the fact that I had sickle cell and when people would find out, I would wish that they would never tell a soul. I was ashamed of something I was born with, something I had no control over in my life, and something I had no reason to be ashamed of having. It wasn’t until I was a young adult that I began to embrace living with sickle cell and it became a little easier to share that information with friends or potential partners.
Sharing the fact that I had the disease always had different outcomes for me- some positive and some negative. I’ve had quite a few hurtful experiences with friendships and intimate relationships. But I have found that many times, the hurt came from the unrealistic expectations I would have for people. When I would be in a severe crisis, I expected my friend or partner to be by my side in my hospital bed or catering to my needs because it was something that my parents had always done for me. It was hard for me to realize that while I had had years to come to terms with my condition, people from my support system needed more time to learn and understand SCD.
Even though I have had many unfortunate challenges with finding love, I believe that finding ways to manage my health has led me to be able to manage my relationships with people a lot better. Over the past decade, I have been fortunate to have a romantic relationship with someone who has been willing to deal with any challenges that sickle cell may bring. I believe that expressing my disease from the very beginning and not placing any expectations on my partner is what has kept our relationship strong and able to withstand difficulties.
Here are a few mantras that are, in my experience, helpful in maintaining healthy relationships:
- Be Honest
Let a potential partner know about sickle cell disease early on so that they can decide whether this is something they can genuinely support you with. Withholding information about your illness can lead to miscommunication, trust issues, and it may make it more difficult for someone to want to support you.
- Be Realistic in Your Expectations.
Other people haven’t had time to learn about and accept sickle cell disease, and people will support you in the capacity that they choose. Take it slow and give people time to better understand you and your needs.
- Be Mindful
Often, living with the challenges of sickle cell disease can make us treat even our loved ones poorly- we’ve all been there. Try to be mindful of how you are treating others even during difficult times. Reflect on your behavior during periods of crisis so that you can recognize and become aware of the changes in your attitude. Self-reflection is key to maintaining positive and healthy relationships.
- Be Grateful
Be grateful for the people that you do have in your life and never take them for granted. The smallest gestures can go a long way.
- Find a Strong Support System
Working with a provider and therapist is very important in managing relationships with sickle cell disease. You may also consider joining a local support group to be able to share and discuss with others who know exactly what you’re experiencing.
Illness is tough, however, healthy relationships are definitely possible, especially if you make them a priority. I hope these tips are helpful and know that I am rooting for you!
By Juanita McClain