Illness can be extremely isolating

Over the past couple of years I’ve become a glass half full sort of person when it comes to illness. Being more optimistic about living with chronic pain hasn’t been easy, it’s been fraught with sadness and hard fought. Over time I managed by becoming better at realising my limitations rather than stubbornly trying to continue on as the person I used to be before I became ill.

However I’d be lying when if I said there aren’t days where I find things profoundly difficult. Most of my self doubt these days comes from how isolated illness can make you feel.

I want to talk through how I feel very cut off from the rest of the world when illness gets me thinking a certain way, maybe you’ll relate to some of it.

How I don’t like feeling

A great metaphor for this is feeling completely alone in a room full of people. Illness does its best to rob me of the ability to easily settle and relax into life with others as I once could. This is because of the invisible nature of chronic pain. It’s impossible for those around me to engage with how miserable the pain (and the knock-ons of pain) are making me feel that particular day. I just look the same as I always do.

I sometimes find myself pushing on through situations involving others who are not ill with an extremely heavy heart. Managing quietly with an extremely heavy and tired soul. Exhausted with a heart fit to burst in the worst way.

Despite how well you look to others, whilst in pain you feel fractured, like your worldview is slanted and bowed over to such a degree that it’s like looking through a prism of glass, everything and everyone seems to act differently to you when you’re finding things hard.

Spending time with people who are well means exercising patience and empathy when you don’t have a whole lot of either due to how truly awful you feel. The social conventions of not wanting to rock the boat unless absolutely necessary leads to me being unusually quiet when I am feeling my worst, perpetuating my sense of isolation further.

You start to feel trapped by all the thoughts and feelings surrounding illness. Worries and suspicions that none of the fit people around you will have to be troubled with on a daily basis, and the thoughts mill around your head endlessly as you try to focus your mind on what you’re supposed to be doing as well as away from your pain.

Coincidently I find worrying in such a silent way like this tends to make my pain worse, as the anxiety washes over me until I can’t stand it anymore. I tend to over-think things when in pain because pain and tiredness makes you risk adverse and makes you second guess things that you wouldn’t normally worry about.

There’s nothing wrong about feeling this way from time to time, but personally, I prefer to keep my thoughts constructive, that doesn’t mean being positive for positivity’s sake, but giving myself the benefit of the doubt and trusting my abilities rather than doubting them when I am feeling low. This is incredibly hard to do in the worst low. However trust in yourself and in others is at the heart of living with endometriosis well.

The positive of looking through the prism of illness

The upside of this is my discomfort caused by pain makes me far less tolerant of situations that I don’t want to be in. Being in pain all the time takes so much energy – it’s exhausting. I find myself more able to easily say no to people to or extract myself from situations that I don’t want to be in. I resolve my silent turmoil by asking myself a two really important questions fairly regularly:

  • Is this really worth me continuing to be in pain?
  • Do I really want to be here?

If the answer is no (to either of those questions), it’s a no brainer. Go home and rest, or do something else you’d rather do.

How I improve how I feel

The feelings above are why I love appreciate every minute I spend with someone else who is either chronically ill, or a really close and supportive friend. I can drop all the pretence and talk and share my experiences truthfully before it gets to the point where the anxiety is unbearable.

Being around these sorts of people is effortless, it’s calming and soothing. They are my support team. They understand when I am at my limit with pain and cannot do a particular activity. They don’t judge me or pass comments about the intermittancy of my illness. These people strike the right balance between helpful and supportive confidants, and people who haven’t changed how they treat or speak to me. They realise that I am still the same person I always was – just a on occasion a little more weary.

Here’s the thing though, despite what I shared above, your aim should be to surround yourself with as many people as possible from this scenario and convert as many people as you can to your support team as possible. The prism of illness doesn’t have to weigh you down, but it can keep you focused on what you truly want.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

7 responses to “Illness can be extremely isolating

  1. Thank you so much for sharing your experience! I am a chronic pain sufferer who is as yet undiagnosed (and beginning the testing process). First of all, reading this post, I suddenly don’t feel so alone anymore – how you describe the challenges of chronic pain is spot on. Secondly, thank you for the reminder not to get caught up in the isolated side of things, just what I needed to hear today! Have a beautiful day. Namaste

    • Glad to hear that it was some help. I don’t feel this way a lot anymore, and I dread it when it does come, but like all my practical, positive advice on living with endometriosis, it’s really important to share.

  2. I agree entirely with everything you have said. I have really been struggling lately though as I now have the side effects of Zoladex to separate me from my peers too. This has left me weak and too tired to socialise with them at all really. You are very lucky to have people close enough to understand your pain, as finding someone who supports you and genuinely understands is hard to find.

    • Quite so. I’ve lost a great deal of friends through chronic illness. Lots of people couldn’t cope with the fact that I was “broken”. Some of them only wanted the well me, and not the issues that came with the poorly me. Others just drifted away and I realised it was me doing all the work before I got sick, and without my energy things petered out.

      My conclusion is: I am better off without those people in my life, and so are you.

  3. I love everything you write but I especially liked your point about converting people to your support team. I am so very grateful for the support team I have who know just by looking at me sometimes that there is something wrong. I had a night with friends planned for weeks, a simple get-together to watch the Les Mis movie and make fun of Russell Crowe. We looked forward to it so much, and it took some organising to get it in everyone’s schedules. When the day came, I felt like crap. If it had been any other event, with any other people I might have cancelled. But because I knew that my friend who was hosting was supportive, I knew I could use my spoons for driving and not have to worry about anything else. I ended up going in pj bottoms and taking my hot water bottle with me. It meant the world to me to have people I can be around who just accept me, pain and all.

  4. That’s so great to hear, that’s exactly the sort of thing I am talking about, it makes all the difference.

  5. I completely understand and I feel exactly the same, I wish I could find more people to help me but I don’t know where else to look apart from online I guess my husband and my closest friends will have to do but even they aren’t there all the time.

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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