Written by Sickle Cell Warrior on 25 February 2011
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. . 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 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.
If the choice is to go to a social event drugged up, go in pain or not go at all, which would you pick?
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.