How My Illness Gave a Whole New Meaning to the Word 'Lonely'

Is anyone out there?

Fellow spoonies will know all too well that having a chronic invisible illness is lonely. In fact, for me it has given a whole new meaning to the word “lonely.”

Previously, lonely meant not having a partner. Being far away from family and friends. Being literally alone. Before – as long as I was with people – I was able to connect. Feel understood. I was able to feel a sense of togetherness with my family and friends, which starves off loneliness for most people.

Lonely was that tragic character in “Love Actually” – opening sequence.

When postural orthostatic tachycardia syndrome (POTS) waltzed its way into my life, all of that changed. Since getting sick, my family has come together around me like I could never have imagined. Friends and work mates have moved mountains for me. My partner is by my side unconditionally. He is always there. Always.
And yet, I am lonelier than I have ever been.

It’s little things that make me realize this. A simple post on Facebook is what often brings it to the forefront of my mind. There’s a woman named Jennifer Brea, who is a myalgic encephalomyelitis/chronic fatigue syndrome  (ME/CFS) patient that has become an advocate for invisible illness and women’s health. She is completely inspiring. The amount she has achieved while strongly affected by her illness is seriously impressive.

I wanted to share her recent documentary “Unrest” on Facebook. I wanted to share her story, and I guess to an extent, use her as my voice. ME/CFS has been one of the things I’ve been diagnosed with along my winding journey. I could relate to her in a way that is now painfully rare for me.

And I couldn’t press that “share” button. After everything I’ve put up with in recent months, you’d think a click of a button wouldn’t be too much to ask.

I was scared to post this purely positive, inspirational and important piece of media because part of me doubted anyone was listening. Part of me thought I needed to keep my suffering private, because people didn’t want to hear. I felt guilty for speaking up because I know people often don’t know how to respond. I was also terrified of people thinking I was simply seeking attention for my suffering. Yet, I felt and still feel a responsibility to those who can’t speak up. To those who don’t have support around them to give them the courage. I’m doing it for you.

I felt stuck. I didn’t want people to think I had some sort of unhealthy obsession with my illness. I didn’t want them to judge me for talking about it. For putting some sort of pressure on them to talk about something that is so hard to relate to.

I was constantly asking the question, “Is anybody actually listening? Is anybody out there?”.

I quote I came across reading about chronic illness brings this subject home.

“The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.” – F. Scott Fitzgerald

Now this could be relating to chronic illness, or not. Attach this quote to someone watching as they are made redundant from their job, knowing their trade is dying and they may no longer have a livelihood. Attach it to someone watching as their loved one leaves them, taking away the security and companionship they had come to rely on. Attach it to someone watching as they learn their body will never be the same again as a result of a devastating road accident.

Pause.

I actually want you to go back to that quote. Read it, and imagine each of those scenes. Feel the empathy. Relate to that pain. If you can’t, come up with your own scenario. Perhaps you’ve felt yourself watching your world fall apart for another reason.

Can you remember? Go back there for a moment.

Watching my life develop into that of a chronically ill person has been the same. It feels like one minute you’re on top of the world, on track towards your goals, sharing your experiences with your friends and family, and the next it’s all gone. All of a sudden, your experiences are not relatable. All of a sudden, you’re singled out in a sea of “normal” people who can only understand illness as temporary. Who keep asking you if you’re feeling better, while genuinely meaning well, but giving you a feeling of such complete and utter emptiness and loneliness, you can barely muster a polite response.

“Watching (your) whole world fall apart, and all (you) can do is stare blankly.”

Are you listening now? Are you here with me?

For the record – I did post that documentary. And as I had feared, not many people responded. Two of my wonderful aunties started a conversation and one of them watched it. I really appreciated that. Appreciating the small things has become all too important to me these days.

Now if you’re reading this as someone like me, someone who’s trapped in the lonely grips of chronic illness, I bet you’re asking now, “How do I cope? Is this ever going to feel OK?”

I’m sorry to say, I’m not sure I have an answer to that question yet. But I do know that mainstream social media is not where you should lay your hopes. I think the best strategy is not to do what I often do – and that’s to go quiet.

Start talking. Find people that want to hear, genuinely, and talk. Find people who can relate. Because we’re all here. We’re right here for you and we’re listening.

Getty Image by max-kegfire