I know that for myself, as I was growing up I didn't share with anyone outside my family that I had this disease. That can be a very lonely place though family is by your side there is a balance that's needed. One cannot deal with all that comes from suffering from this disease with only family nor can one deal with it with only friends. There is something that each group of people brings to someone suffering from a debilitating disease.
From my previous blogs you can see how difficult it is for me living with this disease. So when I say that the role that family and friends play is Essential, I mean that when we as sufferers go to that dark place that sometimes comes with the amount of pain, pressure, and circumstances that we deal with, it can be the source that we go to, the strength that we draw from which pushes us forward through the cycle of attacks we endure.
When one goes through the hardest times in there lives, the people surrounding them are the one's that can lift that person up. Without having a circle of friends & family it is very hard for anyone, let alone someone with Sickle Cell Anemia to take on everything that comes with having this disease. My desire here is to highlight & acknowledge how integral the role you play is. Don't underestimate how much of a contribution you make to a loved one. I have only experienced one side & that side is from a hospital bed. When I think of what it takes to be on the other end, where you see the amount of pain an attack brings on, I wonder to myself & ask would I be able to continue to stand there? The fact that one chooses to continue to be that source of support for someone who is chronically sick & the fact that despite how uncomfortable & difficult it may be to witness all the pain an attack (Crises) brings on it only shows your level of Love & Commitment to that person. Though in the midst of an attack (Crises) knowing that a loved one is there by your side, it does wonders for the morale & ultimate well-being of a sufferer.
If you know someone with an illness or someone with Sickle Cell Anemia then reach out to that person. Don't feel like you have to have the right answers or worry that you have to say the right thing. Believe me when I say that just as much as you may not know what to say when your loved one is going through such incredible pain, the person suffering through the pain doesn't know what to say knowing you’ve seen them in such a horrible state. Support. Being there for your loved one means sticking by there side. When we sufferers talk about the pain we go through it may be a bit overwhelming & scary to hear the details of what we endure but you don’t have to shield your fears from a sufferer. Just as us sufferers are seeking a refuge where we can go to you & release all the emotions & trials that come up you too can open up & share your emotions & the trail of seeing us in so much pain. By openly communicating we-together are opening up a bridge of communication, a bond of trust and that is so important so that a Sufferer does not have to feel like they can’t share how they feel and YOU don't have to feel like you have to put up a front that you have it all together. I know for me it became second nature to keep my feelings to myself because the times I did share my heart it would either scare my friend or they would scare me by giving a response like: are you dying? Being shot down when I was open brought up a wall between me & everyone else which can bring both a feeling of discomfort & weirdness. Not everyone can handle a situation but those that care enough & love enough to make it happen despite fears & insecurity—I encourage you to do so.