Meet Mary, Sickle Cell Warrior, Poet and Creative Writer
Dating is a bit of a hurdle for everybody. Jumping through hoops of fire trying to impress the other party, learning about what you like and dislike, managing expectations of family members (if you’re planning to get in deep like that!) etc. I’m no different to you, these are all factors I’ve had to consider and overcome in dating, along with some other things…
As a sickle patient (HbSS) I tell potentials about the sickle almost instantaneously. I do not hide the fact I have sickle, my main reason (in terms of dating) being I want people to make an informed choice. I do not want to trick anybody into being with me by omitting vital information. And if I am being brutally honest, I do believe that anybody dating someone with a long term illness has every right to know IN ADVANCE what exactly they are signing up for.
This comes with hurdles, explaining what sickle cell is, the various treatments I have to undertake, the impact on my self esteem, the fact he needs to take a blood test as early as possible so we can find out if we can even be together, there is a lot. Even explaining how it affects my life. Like for example, I am on a transfusion programme at the moment, prior to that I was on a chemotherapy treatment programme (yes sickle cell is sometimes treated with chemotherapy) so when I started to lose my hair it was a massive blow to my self-esteem, explaining my constant low mood to my then boyfriend was difficult, thankfully he was understanding.
But it’s not all big things like that, sometimes I get tired. I cannot articulate the type of tiredness either, it is more than “oh I need a nap!” It’s a tiredness whereby I feel like I could drop down and die. So sometimes I cancel date plans last minute or try to change going out to just chilling indoors which some guys have taken badly, thinking, or rather assuming I’m uninterested- because they don’t understand. I know it is difficult to understand so I try my best to be patient (pun intended!)
I’ve been on the transfusion programme for about three/four years so my arms are scarred pretty badly. It’s actually something I’ve never noticed or even perceived negatively. Until one day, I went on a date and my date asked me “Urgh! What’s all that on your arms?” I told him I was a reformed heroin addict. I have to make light of statements like that otherwise I’d cry. His face dropped, after I finished laughing hysterically I explained I had sickle and I was on treatment. That was a first date. Usually people only display their best self on date one, but many sickle patients have to disclose a whole heap of private medical history, to somebody who is essentially a stranger. Sometimes we may not even intend to, but the questions about the scarring or about the yellow eyes leave us no choice. It’s either that or we could lie, the latter I’d never recommend because it will always end badly.
This is why I’m open about the condition. Well, partly. That and I don’t want to shock anyone if I went into crisis around them! 😂
No, but seriously, jokes aside, it’s important to be open and honest when dating.
I mean, being open does not necessarily mean things will always go your way. A few years ago I started dating a guy who I thought was perfect. Okay, not perfect, but we were compatible. He was nice, we got along, had similar interests, you know the deal. He knew I had sickle, he didn’t mind…or so I thought. A few months in and I fell ill and was admitted into hospital. It was not a serious crisis, by that I mean there were no organ complications, no severe infections just a crisis that required chronic pain management. Hospital reception is quite poor so this gentleman I was dating at the time, had been trying to get into contact with me for some days, but to no avail. Once I was moved to a ward with reception all the messages came through. I messaged him back “Hey hun, sorry for the delayed response, I’m in hospital.” He called me almost immediately to ask what happened. I explained I had a crisis but that I was okay, he asked which hospital I was at and informed me that he would come to see later that day. He never came to see me despite his promise. When I called or messaged him, I got no response. I never heard from him again, well, I didn’t hear from him for five years. He did recently try to pop up, I heard him out, I accepted his apology but I told him never to contact me again.
That was a difficult pill to swallow. I thought I had done everything right by telling him in advance. Why didn’t he want me? A little part of me grew up that day, I realised that nobody owes me anything, and it was a lesson I needed and that I have never forgotten.
There were more lessons I had to learn.
It’s not all bad though, I have many negative dating experiences due to being a sickle patient, but with everything where there is bad, there is also good.
I’ve met some absolutely amazing men. Men, who have been at the hospital every single day through some of my darkest days. Men, who have put on a brave front when they knew I was scared. Men, who have wiped my tears and massaged my pain riddled limbs. Men, who made sure I never gave up hope. So I do know they exist.
Though secretly, a part of me does feel as though I will never find somebody to be with long term to start a family with; because even the good guys I met were still human. Even they had breaking points where they could no longer handle the burden of having a sick partner. I understand that, I know not everybody is equipped to deal with a sick person and I do believe people should not be guilt tripped because of it. At the end of the day, sickle cell is not their cross to bear, as it were, it is mine.
But I do hope that one day I will find somebody willing to try and help me lighten the load a bit, because I do want a family one day. So I guess we will wait to see what comes of the future.