What are the positives of being born with SC

[Della30]

I think SC is horrible, debilating but I also think it makes you look at life in way that people don't. Resilience is our middle name, survivors is our crown. We often talk about the negatives of SC and I know they are uncountable but what are the positives for you?

[Hidden]

Thanks for asking this important question. Because this is a new community we are still inviting people to participate so you might not get an answer for a while. It sounds like you have thought hard about taking a positive stance. Resilience is such an important "skill" and I think it can be learned. Do you have some tips on how to build resilience that you could share?

[Della30 in reply to Hidden]

Thank you for your comment. The first step in building resilience is acceptance. Accepting that SC is part of you is important in how you deal with it. Acceptance then leads to wanting to know about how SC affects you, knowledge then leads to managing the symptoms, understanding the choices and how your lifestyle impacts on you. Your acceptance and knowledge of SC takes away a lot of stress which we all know impacts negatively on your health no matter what it is. Acceptance and one's knowledge about how SC affects you makes family, friends, healthcare professionals and society understand you and how to deal with you. Although the effects of SC are harrowing, learning to get your views about SC in a way that engages others to find out more about it is important. You have to talk about it in light and shades, do not hide it because it is part of who you are. For example when I tell employers about it - I talk about how unpredictable it is and how I could be away from work for a long period, my sickness absence may be higher than other employees but this is where I put my twist. I tell employers how good I am at my job, what else I bring to the role that no other employee can and how their support would greatly help me manage my condition. You can only say these things if you accept your condition and have knowledge about it. Same goes with friends, family and health professionals. If you accept who you are without any apologies you give others the permission to do the same and treat you with respect and pride. They get to know the battles that you face but how you are still living a full life regardless of it. They understand that you could be the life and soul of the party but just as swiftly you could be screaming in pain the next minute. You almost become a role model or as my son says a legend. If she can do that with SC then what is my excuse. You are told so many times how you cannot do something because you have SC and the only way to counteract that 'warped' opinion is by being resilient. Being resilient is almost a necessity in dealing with SC and it is a choice that one needs to make to live with the condition for however long. Because the opposite is not worth thinking of.

At hospital appointments I am seeing a lot of young people and hear the nurses talk about them in a not so good way. But then I ask them apart from giving them all these pain killers which they obviously need but you question what is being done to educate them. Are there sessions where there are peer education or forums, information sharing, listening and learning sessions. Forums that involve health, social, government agencies, third sectors and a cross session of the general public that learn, listen and celebrate how we are navigating through this difficult life of SC. My GPs are always quick to refer me to the haematologist but not before telling me how amazing they think I am for doing x y and z despite my condition. That in itself boosts my confidence and residence. SC is a big issue but we hardly hear about it or even hear the positives about it - it is not a hot topic in the media. Unfortunately we have to make our own noise, shine a light on it, bring out the harrowing effects but also shine a light on those who have not allowed SC to limit them regardless. I remember reading an article about a personal trainer who suffers from SC being prosecuted by the benefits agency. What message does this give our young SC warriors? When I was told at 10 years that I won't make it to see my 17th birthday my mother told me I can do anything I put my mind to, it may be harder but to look at how I will feel when I have succeeded. She died in my early 20s am 45 and those words have resonated every time I am told I cannot do something.

[BlackSCD in reply to Della30]

I think this is the most compelling piece on SC I have read in a while. Thumbs up to you Della30. It really encourages me to look at my attitude of being negative, after I survived the bad prophecy of dying at Age 30. I'm 30 and two months. And I have achieved a lot of my dreams and aspirations even I was made to forgo some like being an athlete. I believe SC are strong, resilient and have tenacity to endure any obstacles in life. Thanks for this piece.

[Della30]

You very welcome, you have just plastered a huge smile on my face.👍🏾