Loneliness: The Silent Symptom of Sickle Cell

It is not an understatement to say that it is harder to find lasting and meaningful friendships as one progresses into adulthood and the new life that awaits. A quick scroll on apps made for finding your next friend shows many profiles of men and women in their early to mid-20s still seeking out friends in any form.

Though I have noticed that most bios reflect similar trigger words of ‘loving travel and coffee dates,’ most people who have willingly dived into the raging tornado that is friendship apps can attest to the violent unsteadiness of swiping, matching, chatting and having it not to lead outside the chat. This leads to frustration, deleting the app, revisiting the app, reworking your bio and restarting the entire experience again.

Trying to maneuver with sickle cell

If ‘normal’ people can still be lonely and left drained after a few months of repetitive turmoil, then how does a person with Sickle Cell maneuver the same terrain? Well, the cycle is one that I have tangoed with for the past three years. However, it is in instances when the cycle pauses, and there is a connection made with another user, and the conversation finally gets a bit deeper, and all hopes are high; I have found that this is where the true struggle begins.

Trying to maneuver my new adult life and trying to find a good enough grasp of my illness, planning seemed the best way to try and tame the pain and the fatigue or at least manage the symptoms better. So, planning it was.

How to plan

Where I can try to prepare for events no matter how big or small, spontaneous or not, there are many other things that I cannot prepare for with an invisible chronic illness. I can prepare for a family dinner by not participating in any strenuous activity at least a few days in advance.

But how can I prepare to re-spark a conversation with a rare encounter with a ‘hopefully-soon-to-be-friend’ after I got ‘ghosted’ in the middle of discussing which Sponge-Bob episode of the first five seasons was the best? Jokes aside, when caught in a whirlpool that is a chronic illness, there are only a few times when I get a break from the battling current before being whisked off again. Inconsistency is a thing frowned upon in the world of trying to make friends. How can I make friends with a chronic illness if the building process of a 'friend-ship' continues to get interrupted and I continue to run low on supplies?

I carry a tote bag, literally and metaphorically, that is filled with safety nets for when I prepare to socialize. On special occasions, when I leave the house, and there is an event planned that I am looking forward to, I find myself clutching onto my tote and leaning heavily on my safety nets. Unfinished conversations on friendship apps aside, loneliness truly manifests itself when a crisis or severe pain episode finds itself interrupting a gathering that I had been preparing for, for weeks. Like an unwanted visitor to a party, it crashes the conversation, sucks the laughter out of the room and spills wine on the white rug. Embarrassingly, the pain sends me seeking a quick remedy or comfort. At times, comfort manifests as the option to leave the event early or to be locked away from concerned guests who will soon join together in a circle of pity exchange and whispering of ‘I’m sorry’ to each other.

Managing loneliness

Making friends with Sickle Cell is a complex task; socializing with a chronic illness is challenging, and very quickly, loneliness becomes a new symptom that I need to manage. It is a symptom that seems to weigh down heavier than fatigue and stabs harder, further than the daily pain. So again, the question is, ‘How do I make friends with a chronic illness?’ Well, acknowledging loneliness as the symptom it is, the next step is to treat it like I treat other symptoms. How can I manage it?

Being cooped up inside seems to worsen it, leaving one to stir in a pot of their own overwhelming emotions. I would suggest a dose of ‘taking advantage of every opportunity to be outside.’ That includes times when you would think, ‘What’s the point?’ Something like soaking up the sun for two seconds on the next trip to refill my medication.

Taking a break from the apps and a break from the screen is another great way to tackle this new symptom. I recommend taking an hour’s break in the morning and another to wind down. Not fully immersing myself twenty-four/seven in social media and the pixelated provocation of what I might think a social life should look like allows me to focus on things I enjoy doing on my own. How can I make friends if I cannot enjoy my company first?

Joining a club or finding a new hobby that may include a team, like a book club or a pole class, is a treatment I look forward to taking. Hopefully, it will allow me to not only perfect a skill but also take advantage of the phenomenon called ‘forced proximity’, and I will be able to meet a friend, better yet, a friend who obviously shares the same interests.

Going into the new year 2025 with this newfound symptom called loneliness, my resolution is to step out of my comfort zone as much as I can to manage it. All in all, the struggles of making friends while having a chronic illness are just the same as the struggles of making friends in my adult life overall, just with a few more steps.

Steps like ensuring that I will make my limitations known when given the opportunity. At times, that may look like trying to pick up where I left off in conversations due to my pain or leaving the event a little earlier than expected. I hope you all are learning, like me, how to manage this new symptom. Here’s to a new year and no new diagnoses. Until next time, stay hydrated, take your medications and keep creating!