Sickle Cell Can Be Lonely
I have had this illness for many years, met many people in my life, and been around my family whilst in pain, but something always remains the same THE LONELINESS!
I could be in a crowd full of people, but as soon as that pain hits, it is a different story. It is like I am trying to focus, trying to fit in, but everything just starts to sound like on big echo. The more the pain hit, the less I focus but still, I manage to smile and get through the event.
Recently I have been feeling a different kind of loneliness. Now don’t get me wrong, this might just come down to age or life just changing, but I feel as though I don’t have anyone around me. Its funny because I know SOOOO many people, and yes maybe the pandemic has something to do with it, but I have always relied on the support from my friends especially having this illness.
Friends and family
As a single mother and also a person with a chronic illness that does not have a full-time job, I can see that maybe my focus has been around my social circle a lot growing up. You see, it was hard for me as I lost my mother at the tender age of 13, so yes I have relied on people for many years.
Relying on those around me
As I have grown up, I have realized that maybe some of my friends did feel neglected as it may have come across that they may have done a lot more for me than I did them. This was never my intention, as I have always tried to be around and involved the best I can. In my teenage years, this was much easier. In my twenties, not as much as I would be admitted into hospital a lot more. This also meant I would rely on my friends a lot more to help with my son.
Going through this day-to-day life of pain in my thirties has really shown me how much I miss them. How did I not even notice how much my friendships meant to me until everyone became “busy”?
Learning to be independent
I am now learning how to do things alone and adapting to being in my own space, but this is very new to me. The more I am in pain, the more my thoughts become louder.
Making new friends
Along my new journey into my 30s, I have met some lovely sickle cell warriors that I can now relate to and even start to call my friend. So, I guess even though I do miss my old social group I have now found a set of people. People that totally understand me and what I am going through as they themselves have experienced similar things.
The world still keeps spinning, and so do you
Sometimes in life, the people or things we want are right in front of us but we just don’t see it. Cherish the people around you, notice that life can and will change it does not mean there is anything wrong with you at all - It just means the world is still spinning and time is still moving. Even if you feel like you may not be moving with it you definitely are!
Keep shining warrior.
Do you consider yourself an advocate for sickle cell?