A common misconception is that sickle cell patients are anti-social. Take a peek behind the curtain and find out why this is not the case.
I saw this question at The Sickle Circle, and just like that, I was inspired to write again. This question is one that has been asked to me in one way or another over the years since I’ve become a sickle cell advocate. One of my friends actually told me, “You’re not like other sicklers I know, because you actually are social.” *crickets* I had count to 10, not flip out, and tried to contain my reaction by asking her probing questions to understand her perspective of people with sickle cell.
The common misconception is that we are anti-social. Her complaint was that her cousin seemed to bail out of alot of social events, and often flaked out on plans.
To me, the answer is obvious…and it has nothing to do with being anti-social. It has to do with being in chronic PAIN. Although I have developed coping mechanisms over the years; pain still does affect my state of being. Pain affects my mood: it might make me irritable, grouchy, testy or even whiny. It might make me angry, depressed or overly emotional. In addition, one can never predict when you are going to have a sickle cell attack. She might have been all psyched and stoked to go, but then a pain crisis hit, and she couldn’t make it. Dealing with chronic pain is HUGE part of the reason we might be seen as anti-social.
The second reason, besides the pain, is the fact that we are chronically anemic. Our blood levels are usually always lower than average Sally, and as a result, we get tired easily, and often exist in a state of constant fatigue. For some, it is a huge deal to get out of bed in the morning, because you’re exhausted, not from lack of sleep, but from lack of adequate blood supply. Your sickled cells do not carry enough oxygen or nutrients, and your regular red blood cells are not enough to compensate for that lack. Which means that most of the time, sickle cell patients are living life with the gas half empty. For those without sickle cell that want to relate: think about how you feel when you are on your period. The listless, tired, lack of energy, can’t do anything but sit on the couch day when your period is at it’s peak. That is how we are ALL THE TIME. Whenever I get a blood transfusion, it’s the most amazing feeling in the world. I feel energized, rejuvenated and able to tackle anything and everything. Unfortunately, due to the risk of iron overload, we can’t have frequent blood transfusions like we need. So we exist in the tired state…all the time.
Another issue is the pain medications that we take to counteract the chronic pain. These do come with side effects, and some painkillers affect your mood, and even the way you talk. It can affect how you think, answer questions, and even process information. Do I really want to show up to a baby shower looped up on Oxycodone? Or maybe I should go in pain instead, and sit in the room clutching my leg because it hurts so bad while all the party goers are looking at me like I’m crazy. [stextbox id=”alert” color=”000000″ bcolor=”000000″ bgcolor=”c2c0e1″]If the choice is to go to a social event drugged up, go in pain or not go at all, which would you pick?[/stextbox]
People with sickle cell have to watch out to avoid the triggers of a sickle cell attack. These triggers can be anything from dehydration to swimming to flying, to eating pizza, to alcohol, to overexertion, to stress, to your period, to communicable infections like colds, to……..the list is endless. The first thing we think about when we get invited to places…is the social situation going to have a potential trigger? Are we supposed to go dancing at the club? Then I can’t drink, or dance for too long. My girlfriends are going to wanna know why I’m the party pooper, and then I have to explain to them the intricacies of my condition. The next day, I get invited to a day at the beach. Here we go explaining why I’m not going into the ocean. The next day, I get invited to a mosh pit concert. Now I have to explain why I can’t be in the crowd because someone might sneeze the flu on me, and that will land me in the hospital on the ventilator (this really happened to me btw).
Although we like to do stuff, we also have to take extra precautions. It can get overwhelming and frankly annoying to have to explain to each and every friend, each and every time you go out all your precautions, reasonings and issues. I don’t want the social outing to become a sickle cell pity Tosin party–and at the same time, I can’t put myself in a situation that can compromise my health. So sometimes…the easiest thing is just to say no to an event and avoid all the potential fuss.
So when a sickle cell warrior does come to your social outing, please have some respect for all we had to go through to get there. We are taking a chance that this event won’t become a trigger for a full scale exacerbation. We are pushing ourselves through a state of chronic tiredness and pain, and we showed up just for you, because you are my friend. Be a friend back and don’t pass judgement. Be supportive and understanding, not judgmental and critical.
AMEN!!! Thank you for this. I also make it my business to drive whenever I have been asked to go somewhere. That way as soon as I feel (whatever type of way) I can leave without the fuss or much explanation. However, I have faced being excluded all together by so called friends & groups. Some have treated me as if I am too fragile and are skeptical about asking me to join the activities. I’m older now and over it though. If they don’t have the common courtesy to gain more information about my illness or show any empathy then they are NOT REAL FRIENDS. I don’t need them and they don’t have my best interest at heart. I have the most fun by myself anyway! 🙂
This was so on point. Thank you clarifying this for people who clearly don’t understand our plight. I have friends and family both that want me to push past what I can realistically and naturally do. I often push myself way past where I need to, just to make others happy. Which I end up getting sick. But no one puts two and two together to realize the cause and effect. And in the end I am still considered the party pooper or bettr yet “Lazy.” So sad!
Great job on the reply SCW, I have battled with this most my life. People accusing you of flaking and blaming it on Sickle Cell. The sad thing is if Sickle Cell was more widely acknowledge and discussed, people would see the gravity of this illness. They wouldn’t treat me like this if I had Cancer. But in my opinion, one terminal illness is no less severe than any other. Sicklers still need, care, concern, support and most of all empathy. Keep up the fight, I feel like you’re telling my exact story. Thanks for the encouragement!
This post is right on mark. Thumbs up for hitting the nail right on the head.
This statement:
”So when a sickle cell warrior does come to your social outing, please have some respect for all we had to go through to get there. We are taking a chance that this event won’t become a trigger for a full scale exacerbation. We are pushing ourselves through a state of chronic tiredness and pain, and we showed up just for you, because you are my friend”
Doesnt this sound a bit despondent and seeking for a pat on the back? Dont get me wrong I know about being tired all the time and being short of blood and going back home in pains after a hard day of partying…but this last statement somehow calls for pity.
Seeking Pity or trying to play on the society’s conscience isnt what we are about…we dont want a pat on the back for ‘showing up’…what we want is for the society to understand that sometimes its difficult…but not all the time. There are Sickle Cell Warriors that are doctors that are required to stand up for long hours everyday, they do this everyday and bear it well
I’m just trying to point out something here, that becos we are born the way we are, isnt for us to be apologetic (which thank God this post isnt about) nor defensive. We are humans like every other person and no other human being was put on earth to sympathise with us every day just becos we were created different.
No offense meant and I hope none was taken.
…It makes outsiders feel that Sickle Cell Warriors are self serving attentioin seeking people
Which we know, is not true.
I have SS, and im far from anti-social, i promote parties almost every night, and i’ve been doing this since 95′ i know my limits and i try to exceed it. I dont tell anyone that i have sickle cell cause i dont want some one to say i cant do it. The only problem i have is that liquor puts me into crisis and everyone always offering me a drink, they look at me weird that i dont want to drink… recently diagnosed with necrosis and I dont want to stop my lifestyle!
EXACTLY. No words were more true. Tell it like it is!
“People with sickle cell have to watch out to avoid the triggers of a sickle cell attack. These triggers can be anything from dehydration to swimming to flying, to eating pizza, to alcohol, to overexertion, to stress, to your period, to communicable infections like colds, to……..the list is endless. The first thing we think about when we get invited to places…is the social situation going to have a potential trigger? Are we supposed to go dancing at the club? Then I can’t drink, or dance for too long. My girlfriends are going to wanna know why I’m the party pooper, and then I have to explain to them the intricacies of my condition. The next day, I get invited to a day at the beach. Here we go explaining why I’m not going into the ocean. The next day, I get invited to a mosh pit concert. Now I have to explain why I can’t be in the crowd because someone might sneeze the flu on me, and that will land me in the hospital on the ventilator (this really happened to me btw).” I have had that term thrown at me a few times. We are tired of explanations but we cannot be, must not be tired of teaching.
Nice write up. True but my reasons for not going out often usually has to do with human behaviour. 90% of what you have written maybe true for some but I don’t consider those things before I go out. I do absolutely anything that I want to do until my body tells me its enough. I think mind over matter is better than holding yourself from enjoying life. I am anti social because I can’t deal with the nonsense that we like to categorize as social behaviour not because of scd.
A question for Dr. Y, i want to know if the medication given to during an IVF procedure is dangerous for a sickle cell patient
I never knew a site like this existed,i dont feel isolated anymore.i hav sickle cell,i am 21 yrs old & a nigerian.its nice to know other people from around the world know how you feel and wat u go through.people in nigeria dont realy know abt sickle cell,there are lot of misconception,some even believe it is a death sentence bt i try in my way to enlighten them.i pray and hope someday a cure will b found so that we can live normal lives.Remain blessed WARRIORS.
Thank you for this! I thought I was the only one. i’m so happy that this article is written it should be published to raise awareness, I live in a predominantly white area so most people have not heard of sickle cell neither are they fully aware of the condition. So when I explain that I am unwell, or weak or tired people just think im being lazy or ‘overexaggerating’ (which has been said to me in the past whilst at school!) I’m so happy to have come across this. At least I know I am not alone in my struggle against sickle cell. Stay blessed!
Wow,thanks lots for this. They really should give us a break. Having to deal with their constant stare when they see our jaundiced eyes,stigma and not believing in us that we can make it in life etc is boring enough! Am SS (yup,i am,and it makes me ME and so much proud to be ME),I thank God i have loving,caring and understanding parents,family and friends who believe in me and let me get all naughty living my dreams including traveling ALONE across foreign countries and becoming a Medical Doctor despite the hardships. Yes warriors,we can make it,all we need is SEEING YOURSELF WHERE U WANT TO BE AND TAKING CARE OF OURSELVES…LETS PROVE THEM WRONG. GOD BLESS n LOVE U ALL
im the one and only ive suffered from the illness all my life and its been a hard struggle to accelerate in the world having ss ive never been anti social but ive always distance my self from people due to the fact so many are ignorant to the fact of the illness as a kid i was teased and even as a teenager people would make rediclous comments about ss people that wasnt no where nere the truth as one girl told me i wouldnt live to be 18 well god has blessed me to be 34 an healthy but life has been great to me ive lived a great life most of my problems have been due to me in trouble with the law alot of people tell me im the ss robinhood lol im not as in pain as i normally was as a kid due to heavy fluids an pain meds on dec 24/7 which really helps i just ask god to bless me another 34 years and many more as i try to best to woop ss best i can
I should print this one out and place it in my former boss’s intray! I AM NOT ANTI SOCIAL!!!
Well, my immediate former workplace wasnt very sickle friendly.
I was ‘officially labelled’ anti social 6 months into the job because I wasnt that active at a team building excercise, (I really tried my best, but my body wouldnt cooperate!) And, I didnt go out with friends in the evening, didnt do this, didnt do that, was a vegan, was quiet at work, was focused etc. Well, I was just being me and coping with my tiredness, dizziness, and workload.
Well, the list piled up and workplace bullying/mobbing followed. I endured for another 1yr 3mnths, then had to call it quits, I had to take care of myself or else… I have ‘rested’ for 5 months fighting, but am getting better now and I really thank God for this post. I pray that more bosses and co workers would understand the effect of chronic aneamia, pain and fatigue and be more considerate.
I wonder if the answer to the question above is somewhere in the blog?
GOD BLESS YOU ALL
Hello everyone, I am a new parent and I’m desperately to get my two month daughter to sleep longer during night. Currently I am lucky to get three hours rest per night. Thanks