When you have severe ME/CFS, or any illness that causes you to become housebound, you feel isolated. It’s very easy to feel forgotten. Your life is put on hold but the world goes on outside without you. How can an event that is so catastrophic for you not impact on world around you? How can life for others go on as normal? You are surrounded by a cocoon that protects you from harm but it also excludes you from life.
I have spent the majority of the last 5 years confined to one, darkened room. I also don’t watch TV because it’s so exhausting, so I miss out on a lot of developments in the world. Fashions change; When did Men’s clothing become so tight? The music scene changes; I haven’t got a clue about any current artists. Language adapts; slang words that I haven’t the foggiest what they mean. And what’s with this Monopoly money everyone is using? Trends, fads, media, films, TV programmes, politics, they all evolve.
This alienation also extends to friends and the social life you have relinquished. Your only social interaction is online but social media only shows us the edited highlights of someone’s life. Many friends who were once frequent visitors become like passing acquaintances or at worst, strangers. They continue to have fun and to experience adventures without you, their life continues as normal.
But this cocoon means so much more than isolation from developments in the outside world. The cocoon is also there to protect us from viruses, noise, stress, light, anything that could exhaust us, cause us pain or cause a deterioration in our health. For the sake of our health, we are shut off from the outside world, with only a vague understanding of what’s going on around us. We hear hushed conversations, doctors visit, family and friends make brief appearances, care workers come and go, but you feel detached, like you are observing someone else’s life. Loved ones try their best to help, but the cocoon creates a barrier. We are often too scared to break down the barrier for fear of getting hurt.
And anytime I have to leave my protective cocoon (for hospital appointments) I’m bombarded by a sensory overload. Everything is so loud and colours are so bright. I’m bewildered by how unfamiliar my once familiar neighbourhood is, and it’s actually quite scary.
My biggest fear is that I will never recover enough to leave my protective cocoon and rejoin the real world, but I also now fear that outside world, it’s a scary and unfamiliar place. The longer I spend in isolation, the more alien the outside world seems. How long will my isolation last? Will I ever get the chance to emerge from my cocoon, or will I forever be one of the forgotten ones, hidden away from the world? If I am ever well enough to leave the safety of my cocoon, will I even recognise the world that greets me? How will I adapt?
Does anyone else experience these fears?