Navigating relationships
witH sickle cell
Knowing how to communicate important aspects of your experience with sickle cell to those around you can be challenging, so, fuelled by years of experience and expert advice, we made this page to help you navigate those difficult conversations.
HOW tO HAVE successful relationships while dealing with sickle cell:
“I have sickle cell”
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Sickle Cell can have a huge impact on all spectrums of relationships, including family, friendship, and romantic relationships.
Although the conversation is not easy to have, we believe “the earlier, the better,” is the most important thing to keep in mind as you think about telling a significant other/close friend about your journey with Sickle Cell Disease.
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In platonic relationships, it’s important to disclose your sickle cell journey as early as possible, especially in the case of an emergency or in a time when your health is not in the best state, so those around you know how to care for you. Having this discussion with your close family members and friends can open the door to support for you. When we have these discussions with those around us, we make the invisible disease that is sickle cell, more visible, and it’s now Not Just You dealing with it.
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In romantic relationships, Sickle Cell Disease often has an influence on who you choose to be in a relationship with, which is why we highly encourage these conversations be had early on.
Knowing exactly when to bring up the topic will all depend on you and the person you want to have this discussion with. Regardless, it is vital that both you and your partner/partner-to-be, discuss if they are a sickle cell trait carrier. If they are unaware, then it is important that measures are taken to find out if they have Sickle cell trait, in order to decrease the risk of passing on the disease to future children.
If your partner/partner-to-be is a carrier for sickle cell trait (AS), then you may choose how and/or if you’d like to move forward in the relationship. However, it is important that you keep in mind that if you later choose you have children together, there is a 50% chance that your child may be born with sickle cell disease.
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After disclosing your journey with sickle cell, it is important to explain what sickle cell trait screening is and why it is important that your friend or romantic partner gets screened.
They may already know their genotype, however, it is important that they actually show you their test results. In most cases, we recommend that those who have been screened for sickle cell trait request printed results from their medical practitioner. Don’t worry, this is not because you don’t trust them. Unfortunately, misdiagnosis and medical professional negligence are prevalent issues in the healthcare sector, specifically with sickle cell, and especially in many developing countries around the world. This is why we also recommend that individuals who do not have sickle cell get screened at least twice in their life.
Always stay knowledgeable and proactive with your health, and that of your partner!
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Due to the lack of conversations and proper communication about sickle cell, sometimes people may be reluctant to get screened or learn more about the disease. That’s OKAY! We believe we can initiate change by supporting and encouraging those in our community, and that includes those without sickle cell. Always try your best to encourage your friend and/or partner about the process and communicate with them about the full details of screening and what it means, and the facts about sickle cell.
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Your partner/friend is now aware of your condition, and you now know their genotype.
You’ve decided to continue moving forward with your relationship…what’s next? Education and communication! Although this may not be easy, it is important to educate your partner on everything they'll likely need to know about your journey. Communicate what you may need from them in the future or how your condition could affect your relationship in the long run.
Here are some things that may be important for your partner/friend to know:
Your health regimen; what medications you are on, who and where your doctors are, specific dietary restrictions, your emergency contacts etc.
Your pain crisis regimen; what you may need during a pain crisis, what they should/should not do during a pain crisis
Your sickle cell journey; this may not seem as important as the two points above, but we believe there is power in talking about your story. Explaining your journey with sickle cell can give your partner some perspective into how your condition affects your everyday life. This could allow them to think of more personal ways to cater to your specific needs and support you in a way that is effective for you. This can also develop more trust between you and your partner in the long-term.
Finally, it is important to recognize that this may not all happen in one day, in fact, we believe that the process of sharing your experiences with sickle cell should take time. Your health is something that should be taken seriously and handled with care, so you do not have to feel like all of these points need to be said at once!
“My partner/friend has sickle cell”
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Know their health regimen:
Ask them about their medications and appointment schedules
Learn about their crisis triggers
Know their pain crisis regimen; what do you do if your partner is experiencing a pain crisis
Know your partner’s emergency contact information
Know what medications they need
Know what to do if they need to be taken to the hospital during a crisis
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Consistently informing your partner and/or friend that you are present and are able to cater to some of their needs can be really encouraging. Our whole mission is that it is NOT JUST YOU, so let them know that they are not alone. Some ways you can achieve this is by doing kind gestures; it does not have to be big; it just has to be meaningful.
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When in a relationship/friendship with someone who is affected by sickle cell disease, there may be instances where you feel helpless.
Watching them endure painful experiences can be difficult and you may want to take action or help in some way. Unfortunately, sometimes there isn’t anything you can do, but that does not mean you can’t help them at all. In those moments, it is important to remember to be patient with them, be present in the pain, support them by asking what you can do, and encourage them by letting them know they are not alone. A positive attitude can be really instrumental to their journey, so trying your best to maintain a positive atmosphere can go a long way!
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An indirect way to show your care for your partner and/or friend who is affected by sickle cell may be to consider looking into organ donation. Blood transfusions and bone marrow transplants are crucial treatments for many sickle cell patients. Your generosity could have a huge impact on someone’s life, this shows your partner/friend support for not just them, but for their community.
5 steps to navigating
a pain crisis
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Try to find out where they are experiencing pain and how severe their pain is. If they are experiencing lasting pain in their chest, please contact first-responders immediately.
A good method for figuring out the severity of their pain is to ask them to rate the pain on a scale from 1-10; 1 being the lowest and 10 being unbearable/needing immediate medical attention.
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Administer any oral analgesic medication they may have to alleviate pain, as soon as possible.
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Administer a warm compress on the area in pain for comfort. If they do not have a warm compress, an easy D.I.Y. Warm Compress can be made:
Get a plastic bag and small wash cloth/towel
Soak the cloth in warm water
Place towel in bag, tie bag and heat up microwave (not too hot to avoid skin burning)
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If they state that their pain is unbearable and communicate they would like to go to the hospital, ask if they would like you to contact emergency first-responders or if you are able, drive them to the hospital.
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Remember that these are merely TIPS! Knowing exactly what those around you need to navigate life with sickle cell will require you to be intentional with how you listen to them and with the actions you take. Every warrior’s journey is different, so always make sure to ASK them about how you can support them, and the specific processes they go through to manage pain.