Sickle Cell and Falling in Love

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There are so many dynamics as it relates to being married/engaged/significant other with someone that has Sickle Cell. What are your thoughts around this? What have you learned? What works? What doesn’t?

The first thing is to realize is that not every guy or woman can handle being with someone that has sickle cell. I’ve had many boyfriends disappear once they realize the enormity of my condition. There was this guy that I was really serious about that ended up bailing after my first major hospitalization even though he had been there all through the time I was sick. He said he loved me too much to see me in pain like that and couldn’t imagine having to deal with that for the rest of his life.

At one point, I actually had a lot of self esteem issues related to dating because of my sickle cell. I considered myself a “short term relationship” girl, meaning that I could have a good relationship for 3-6 months but once a crises hit I could guarantee the guy was out the door. When I was in a relationship, I tended to overcompensate for being a sickle cell warrior, accepting shit that no one in their right mind would accept from a boyfriend. I felt that this was the only way to cover up my genetic fault. So I took risks, made several bad choices, accepted crap, and did things that I normally would never do.

Eventually I realized that it wasn’t because I wasn’t good enough, it was because the guys I was messing with weren’t good enough. I took a time out and just learned to fall in love with myself. This was when the evolution of me from becoming a sickler to being a sickle cell warrior began to occur. It took about a year to actually get my mind right, and when I started dating again, I was a new woman. There was no more settling, no more putting up with BS, no more accepting stuff that wasn’t ideal for me in the guise of being in a relationship.

After that I met my sweetheart, and he changed my perception of men entirely. I told him about 6 weeks into dating that I had sickle cell, and gave him a synopsis of what it was. The next day, he arrived for a date, complete with printed out information, questions, phone numbers and references that he had spent the day compiling. He even called his Nobel prize nominee Uncle across the country to ask him if he could find a cure for me. That pretty much wowed me.

His tenacity and dedication into not allowing me to be complacent about my condition changed how I dealt with sickle cell. He found Nicosan, and that changed my life completely. He kinda became my guardian angel, and I could rest assured that no matter what was happening with my sickle cell, he had my back.

I guess what I’ve learned is that I had to stop treating sickle cell like it made me inferior in any way. I am a wonderful woman, and until I accepted that about myself, I couldn’t have the relationship that I deserved. I learned to tell the guys upfront about sickle cell, before I got too attached, so that when they disappeared, I wouldn’t have invested too much heart and time into them…lol. I also learned that sickle cell helped me find the guy that was right for me, because it weeded out all the Incorrigibles.

I think it takes a special person to be able to love a sickle cell warrior and hang in through the difficult times as well as the bad times. I know woman that was married to a man with sickle cell for 17 years, and she loved him from the first time she laid eyes on him lying on the hospital bed. She was there for him, took care of him, and treated him like a king, when he was sick or well. But he couldn’t love himself, and started drinking and cheating on her. He served her divorce papers while she was at the bedside of their 2 sons (both with sickle cell).

Relationships can be difficult, and when you throw in a complicated medical condition like sickle cell, then it makes things more dicey.

Call me an optimist, but I feel like the person that God wants you to be with; well, it will work out no matter what hurdles come your way. Because that person was specially designed to be with you, and you were both meant to complement each other. Sickness, unemployment, death, children, life….nothing is able to stand in the way of a relationship built on God. It might take some patience…and decades of prayer, but the right person for you will move heaven and earth to stay by your side, through thick and thin, sickle cell or not;…just like those vows say.

19 COMMENTS

  1. Wow! Wow! And, WOW again!

    I am AMAZED at the commonalities. What amazes me most is how after reading both comments thus far, I feel so connected. I mean for a while there I felt like I was reading my very o..EVEN VALIDATED. Forums such as this exist. 20 years ago, when SC was really bad for me, there was NOTHING close to this in existance. No one could relate – not even a little. I truly felt all alone. Completely alone. And now this! How wonderful! For many years I felt comepletely alone in my struggle. I do not take pleasure in knowing that someone else suffering as I did, but it feels good to know that someone else can actually feel and identify with how difficult it was/is.

    The only difference with me is that instead of being the dumpee, I was always the dumper. I NEVER, EVER told ANY GUY ..not one of ’em…that I had SC. NOT EVER! I always hid it. I just could never talk about it. Not at all. How could I tell anyone that I had a disease (especially someone I liked) That word sticks out a sore thumb. Disease sounds more infectious than inherited. I felt like once they knew, they would treat me differently or dump me…just as you both described in your comments.

    In my early twenties, (since I was no longer in highschool and didn’t have to try explain my frequent extended absences) I played it as normal as possible. If I got sick and had to be admitted into the hospital, I just broke up with whoever happened to be my current boyfriend.It didn’t matter how much I liked him. I’d rather break my own heart and walk away instead of watching him walk away from me and break my heart. I was too afraid to wait and see if he would stick around or not.

    You are absolutely correct, SCW…no if, and or but about it…relationships can be difficult, BUT like anything else, if you couple it with having SC (or any other major health issue), it becomes a whole lot more than dicey…it can become down-right painful and complicated.

    Like you, I had a issues with my self-esteem because of SC. I also had a bunch of “short term relationships” but instead of the dude walking out the door, it was always me. Crazy, right? I know!

    Many years and emotional growth spurts later…
    I was found by and fell in love with a good man. I was well into my thirties at the time, and was over the foolishness so i had no problem with telling that i had SC, so I told him from the jump. Once I told him, he became both student and teacher. He immersed himself in learning all things SC related. He researched and read up on the disease and how it affected those with SC. He also took very good care of me and was extremely patient and loving.

    Thinking of the possibilites of us having a future together, this man even went to get screened for the SC trait without me asking! In fact, I didn’t even know he was going to be tested. One evening after dinner, he hands me the paperwork showing where he had been tested and the results.

    We didn’t work out for reasons that had NOTHING at all to do with SC, but I am still thankful to God for sending that man my way. He caused me to believe that it is possible that someone could really and truly accept and love me for the wonderful Kimberly that I am!

  2. I am married with a kid but do not have the best love life at home. I am a deep thinker and strongly believe in karma so I usually practise a life of live and lets live and do unto others as u wish to be done to you. Anyway I was introduced to this pretty lady by a friend who thought I could score with her and move on but by the time I went on the second date with her, I knew I couldnt do what I intended to do because she was actually a wonderful person and not the type of person my friend and I thought she was. I told my friend this but he called me a chump and weak. I still liked her but not lustfully anymore. I now liked her like a sister and for some reason I had this urge to take care of her. I knew she had a lot on her mind but just couldnt figure out what exactly. Yesterday she told me she had sickle cell anaemia and it broke my heart. I have only known her about 3 weeks but I know she is such a wonderful person. My problem now is how do I let her know that I am married and she doesnt think I am only now telling her this just because she told me about her condition. God knows that from the time I went on a second date with her I knew I wasnt going to sleep with her but I just liked her as a person hence the reason I continued with the relationship. I think she really likes me but I dont know how to go about telling her what the true situation is. I can decide not to pick her calls again and just let things be but that may break her heart and my conscience will kill me. the only other option is to tell her the story just like I have told you guys? is this advisable? I want to make a positive contribution to her life because I truly like her (not lustfully). Shes probably going to hate me if I tell her the story.

  3. Hello Mark:
    I know situations are situations that are only fully understood by the parties involved. I also know the cliche that there are two sides to every story, and that somewhere in the middle lies the truth…however, your actions as you have explained them are less than favorable. Firstly, you are thinking of the other woman (sickler or not) and not your wife! I think what you need to do is come clean to your wife
    1) that you have been having an affair
    2) you need to figure out if you guys want to stay in the relationship and get counseling or stop the relationship
    3) evaluate what about your marriage led you down the the path that you felt it was okay to “hit it, and quit it” while being in a committed relationship.
    Then you need to come clean to this lady. Let her understand that you are not doing this because of her condition but because you are developing feelings for her…and you think she should know the truth about you. If you and your wife decide to take your marriage further then she (SCW) needs to know this, if not let her make the decision to keep seeing you or not.
    Also, I think you need to evaluate whether your feelings for her are genuine or if they stem from knowing her condition and feeling sorry for her…

  4. @ Lady B

    I wont call it an affair really cos I never did anything with the SCW. My feelings are definitely genuine as I have truely liked her from like 2 weeks ago and only found out about her condition 2 days ago. I thought it was going to be a hit it and quit it but by the time we went on a second date, I knew for sure that I wasnt going to sleep with her. I know I have messed up and thats why I came online to get advise. From your responses it seems it is going to be a difficult one. I think I,ll just be a chicken and switch off my phone and hope it blows over after 2 weeks or so. Thanks for the advise. Cheers

  5. I’m amazed at my ignorance of this disease. I recently got emtionally involved with someone with sickle cell. She mentioned it the very first time we hanged out, but I truly did not understand it’s nature. Reading this and trying to beome more informed I was amazed at my own vanity. I was so concerned about what I could lose in the relationship, that I failed to see her perspective. Although I’m a bit ashamed to mentioned this, but I cried at the thought of her pain. I can’t really understand the challenges she faces. I’m just in a state of confusion.

  6. i dont think you should be ashamed about how you feel. I think you should be open and talk to her about it. My husband has been very open and understanding about my pain. Being there and letting her know of your confusion and what you are thinking could very well be helpful to her andgive her a chance to talk about it

  7. @ j.garcia, PLEASE don’t feel ignorant b/c of your lack of knowledge…I know quite a few sickle cell patients that don’t exactly understand it themselves. I pat you on the back for wanting to know more. The best thing that you can do is to be there for your friend and to show your support.
    Now for Mr. Mark…shame on you and your friend for tryin to get you a quick piece of azz! I know that affairs of the heart are some of the most difficult to figure out. I definitely despise a cheat, married or not. You have only known this woman for short period of time and you’re already having so-called “genuine” feelings for her. Look, the truth is an easy thing to explain, lies and deceit are the things that are hard. If you’re not lusting for her then you should be able to be a friend and even introduce her to your family. In our marriage, my husband knows or knows of my guy friends and I know of his female friends. Mark you just gotta re-evaluate your relationship with your wife and figure out what it is that you really want. As far as your (SCW), you don’t really owe her an explanation UNLESS, you’ve made promises that you can’t keep or you’ve portrayed yourself as a potential suitor for her. Now which is it, I know that you feel guilty but my comment to you is not to make you feel any worse than you already do. Although I have SCD, I use to be a lil’ playette during the time that I was on the market but, any female should know that if their new guy ‘friend’ is only available for a couple of hours here and there, or the fact that they havn’t been to your place yet or havn’t met any relatives then something is up. I just don’t know enough of your situation to tell you anything else…but don’t stop seeking advice on your predicament. Don’t drop out of the picture b/c thatz just wrong and who knows, maybe your marriage isn’t meant to work out and maybe this SCW is the right one for you in the end. Please don’t be so quick to skip to the end of your book before you finish reading the chapter that you’re currently in!!! Hmmm, just something to think about…

  8. I am in love with a man with SCD who up until yesterday was a normal guy to me.I am in a state of panic and confusion about moving the rtnship to the next level because i really dont know so much about the disease and am a kind of person that worries alot.

  9. I never really like this guy i call PJ like that from the beginning. I liked him as a friend when we first met four year ago. We started dating in October last year and he told me he had SCD on January 1st this year right after we first made love . If he had told me he was a sickle cell warrior long before now, there is no way i would have dated him but right after he told me , i knew there was no way i was going to leave him because by then i had fallen madly deeply and passionately in love with him. we are both in our late 30s and right now the only thing i want to do is to spend the rest of my life with him because of all the guys i have met , i can confidently say this has been the best relationship in my life and it took me getting over 35 to find it.i know sometimes he is ill and he does not want me to see him that way, infact i have only been with him on one occasion when he had the crisis and even though it was scary, i give my life to be with him forever. we do have issues,we quarrel , sometimes i suspect him of seeing other women,though not confirmed but i will never ever leave him because of the condition. Life and death are in God’s hands and nobody knows tomorrow. if he askes me to marry him today, i would definitely say yes and together with the help of God, both of us will kick this disease to the kurb!!!! Oh by the way… i am a positive AA-)

  10. I just found this site not to long ago but anyway I have the hardest time letting guys in to my life. I have been pretty healthy for the last few years after taking disability but anyway I have told some men in the past about my situation and most of them would lose romantic interest in me and I would but the “your like my little sister” or “you are like my homie” hate those lines. Recently I met a guy and he has been I have not met him in person yet but I have told him about my condition and he has been so sweet he checks on me from time to time asking me am I feeling ok. I want to believe that this could work at some point but in the back of my mind I keep having a feeling like its gonna end up like all the rest. Hopefull though.

  11. Just broke up with a girl,she has been texting me bout my condition,talking bout how am ganna die soon- i ended the relationship,so she using that to get at me-by the way i never told her,wonder how she found out

  12. Hi yuall, a friend intro mee to dis site, and way am glad. Am 29 and God has been faithful . I met dis guy in the university , he became my bestfriend and we started dating 4yrs later and we dated for 3yrs . During dis years , he was caring n loving and took care of me wen I fell ill. We planned on getting married , but his family refused cos I am a sickler . It was then up to him to decide , and he decided his family was rite because he feels he doesn’t have the means to take care of me fiinancially wen we get married . It hurt like hell and I couldn’t live with mysef for 2yrs . I kept hoping he would change his mind and I kept praying . Its 3yrs now after d breakup, am still single. The hurt is still fresh in my mind and I feel he betrayed mee . Cos I feel if u luv someone , u should stand by the person tru thick or tin. All d while we dated , he actions showed he luvs me a lot. I hv tried to moved on , but havnt meet any nice AA . Its hard sometimes cos of loneliness. How do I keep hope alive cos am scared d next guy might leave also for same reason.

  13. The best man I knew had sickle cell my fiancé my best friend. I knew the severity of his condition but I couldn’t ignore the fact that I fell in love with him almost instantaneously! He was confident and had a sense of pride… Nothing could take that away from him. I worried about him especially when he worked long hours even through his pain… But he always said “I’m not sick, I GET sick” he said “baby I’m still a man!” When we started dating I had a 5 month old little girl I was raising on my own but from the moment he laid eyes on her he fell in love with her too and from that moment forth she was OUR daughter. We lost him 10/10/12 our daughter is now 3 years old and I’m completely lost without him. But you are right I truly feel we were made for each other and SCD could not shake the love we shared for each other… I spent week after week in the hospital at his side where we laughed and joked he always smiled through his pain… We cried together it hurt me to see my love hurt… But I couldn’t see not being there for him at times when I knew he needed me most… I slept in plenty of hospital beds with him because I wanted to be close to him not because I felt obligated! I needed to be there not only for him but for me I needed him just as much if not more than he needed me… I miss him every second of every minute but I can say one thing for certain it was because of him that I was able to experience true love.

  14. @ Nicole WOW when I tell you our stories are similar to the day its scary! My love passed away on   
    10/09/12 I would love to talk to you if possible. He voth have/had sickle cell and your story is so similar. he was the strongest man I’ve ever met and I miss him dearly. Still doesn’t feel like he’s gone….My email is nlv.blackmon@yahoo.com I pray for you you pray for me? But anyway I haven’t had a bad experience with daring and sickle cell. Both guys gave understood however one got mad when I didn’t feel well sometimes and couldn’t drive or go out but whatever if someone truly loves you they will stuck by you through anything

  15. i think am in love with someoneSCD and the only hope I have is that a miracle will happen to her because i am so scared to go ahead and let her get attached to me but I really like her and I strongly believe in Miracles, If I eventually date her am going to hide it from my family till the miracle happens. I need advice on how I can make her happy and be supportive.

  16. This site is really helpful. I. Once had a relatinoship dat lasted for 3years and my friend went behind me to tell my man about my status and that pushed him away leaving me with a painful heartbreak. Now I am 30 and single because guys keeps running away once dey know my status. Another guy said he is in love with me and I am starting to feel smtin for him too, we knew each other back den in uni and we neva had dis closeness. Now he wants to meet me after a long time. Should I keep my status from him for now?

  17. Woow!! Am so impressed to hear from fellow warriors. Am passing through the same. Praying for the right man to come my way, someone who will bear seeing me in extreme pain. Thanks #SCW… My spirits are high now though my biggest problem is my family, they see me as a weakling; if I try talking about the future they laugh as if I have no tomorrow.

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