When the isolation of illness causes the outside world to feel ‘alien’

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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 6 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?

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  2. Jo Moss
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  1. i am disabled.have m.e .long list health issues .i would like too have your blog BY E.MAIL

    i do NOT see a Subscribe by e.mail

    i take part in a lot lot research ,my blog,http;//mark-kent.webs.com

  2. The answer is yes. You will eventually be able to carry on with the outside world again. Carefully. Fear is a sneaky little culprit and will be a forever presence but you will learn to combat fear. Then when you are almost feeling real again- your body will betray you, you will flare and start all over again. You will handle the flare and you will be OK. You will ebb and flow with your thoughts and this is where you can master your Fear. I think you will eventually adjust and Fear will need to be put in its place but for now, be kind to yourself and allow yourself to rest while your body fights. For as long as it needs to. ~Kim

    1. Thank you for your encouraging words but unfortunately with severe ME no one can know for sure that I will recover enough to live my life in the outside world. Fear isn’t what made me bed bound and it isn’t fear that’s stopping me from going outside. I remain optimistic that I will physically recover enough but the future is unknown. Take care.

  3. I can honestly say that I don’t think I have ever read anything that I can relate to more than this post! I had tears in my eyes just because it was obvious that it came from your heart and you expressed my feelings so well.

    Thank you for being so raw, real and open!

  4. This succinctly sums up a fear i have. My partner cares for me financially now, and I don’t know how I can manage full time work without falling into flares again. And if i ever go back to web development work, technology would have already changed drastically.

  5. I felt like this after I had my children – I spent all my energy in helping my daughter who has severe disabilities and it was 11 yrs before I could step back again and look out at the world. In that time so much had changed! But the good news is, with the internet and information being at your fingertips, it is easy to get back into the swing of things. Is cutting down sensory information, i.e. watching tv with the sound off, subtitles on, an option for you?

    1. Thank you for taking the time to comment Lowen. Unfortunately even with the sound off I’m unable to watch TV- the rapid moving images cause fatigue, dizziness and migraines, and I struggle to read the text. Take care.

  6. I relate to every word shared! Life continues on outside of my adobe walls… completely un-phased by my absence. Stay strong, lovely one. Whatever you, or any of us fighting these illness battles, are able to do in any given day is perfectly enough. We do all we can… when we can! Take care of you.—Terry

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