Chronic Pain: Family and friends

None of us live in a bubble.  However independent we strive to be, we live in a society that works because of interdependence and the same is true of relationships.  Unless you live in a very isolated area, off the grid, away from tap water and supermarkets, you are interdependent.  For those of us who have chronic pain or illness, this means that you are not the only person affected by the pain/illness.

One of the sessions on the EDS pain management programme covers relationships and there was so so much I wanted to say or ask but that we didn’t have time for so I thought a blog post could be helpful.

Firstly, relationships are affected by and affect our pain.  Loved ones don’t tend to like seeing us hurting and so they try to fix it.  And obviously chronic illness can’t easily be fixed, if at all.  This can lead to friends and family getting frustrated at the circumstances and inadvertently taking it out on us.  It can also mean that they say things which are hurtful or counterproductive, even if they come from a well intentioned place.

From my own experience, there tends to be a spectrum of reactions from people we are close to – either the other person goes straight into care giver or parenting relationship instead of being a partner or friend, or, at the other end, tries to pretend that nothing is happening.  The latter seems especially true of longer term friends who knew you before your pain.  Neither extremes are especially healthy.  Whilst you do want friends who care, it’s more supportive if they support you rather than look after you.  Some people fall into the trap of defining their self worth around how they care for you and this can be a hindrance if you are trying to do more for yourself or if your condition fluctuates a lot.  This can leave them feeling roleless if you do get better and need less help, or if you get worse and need support from other people.  With the people who try to ignore or minimise your condition, you can feel you can’t talk about it with them and they are less likely to adapt with you and your condition.

Talking of adapting… Having chronic illnesses does make you a bit of a master of adaptation.  You learn how to do things in particular ways and so on but it’s easy to forget that friends and family need to adapt as well.  When I started needing crutches and wheelchairs, I started to invite friends for coffee at mine more than going out and I explained this was because of my pain and fatigue.  Again, some friends weren’t as on board with this as others but I feel like all you can do is explain the situation and what you need.  As awful as it sounds, this does mean that you will lose friends, but these are the friends that in the long term you don’t want anyway…

Let’s assume you’re surrounded by loving, well-intentioned people.  How do you want them to react when you are having a flare up or a bad day?  Do you know the answer to that yourself?  Are you expecting your loved ones to be mind readers?  How could you communicate your needs?  The answers to these will be different for everyone and probably different at different times but they are worth thinking about.

I have found a couple of tools that are really useful for me, one I created and the other I stole off a fantastic friend!  I’m going to include them below but before that, here are a few things that have helped me over the years:

  • Discuss flare ups etc before they happen.  Help your loved one to understand that it’s helpful to do x or y or maybe you need them to understand that there is nothing they can do and that it will pass and you just need quiet time.
    • Create a flare up plan and share this with them.  I have my troubleshooting a helen guide on my fridge so my care team have a head start when things are bad.
  • Put together a blog post or video which explains your health etc so that you don’t have to repeat yourself over and over again.
  • If you are in the early stages of an intimate relationship, talk, suggest, listen and laugh.
  • Be specific about what you need – even if you don’t need anything, tell your loved ones that.
  • As much as possible, it can help to acknowledge that whatever irritating thing they are doing is because they care about you – “I appreciate your help and I know that you want to try and make me feel better because you love me.  Right now, the most helpful thing you could do is…”  And of course, reinforce the things they do well!
  • The nature of some chronic illness means that your health fluctuates and this can be really hard for other people to get their head around.  You might find the spoon theory helps them with this.

The two tools I wanted to go into more detail about are the 8 o’clock rule and troubleshooting a helen.

A close friend of mine uses the 8 o’clock rule with her family and friends and it’s a really good way of saying I love you but you need to leave.  The following is information I gave to each of my carers for whilst I am on the pain management programme:

The 8 o’clock rule is designed as a way of saying you need to leave or have people leave because you are tired or in pain or at risk of overdoing things etc.  You are saying to people “I care about you, I’ve enjoyed myself but I need to be alone now”.

If you say “It’s 8 o’clock” it means you need to leave or you need other people to leave.

You can say “It’s getting towards 8 o’clock” as a sign that it’s time to wind things up.

You can also say “It’s 8 o’clock for me” and this means that you are leaving but everyone else can carry on having fun and don’t need to feel bad about doing things without you or feel they need to break up the fun.

If I say it’s 8 o’clock whilst we are in London then it means I am in pain, I am tired and I need some time alone.  There isn’t much you can do for me except check if I need medication or anything to eat or drink.  I might also tell you to be quiet. Neither of these mean you have done anything wrong, they are about me not you.

When I am in a lot of pain or very tired, the last thing I want to do is tell someone that as their concern for me often results in tears.  When I worked, I got round this with my manager by sending him a particular emoji on our work messenger system.  He knew this meant it was a bad day and so it was then easier to ask later on if I could leave early or take a five minute break.

Troubleshooting a Helen was something I pulled together because when I am in a bad place, flare up, whatever, I often forget what it is I can do to feel better.  When I have a cold, it takes someone else pointing out to me that I can try lemsip or paracetamol.  For me it also means the carers understand there are different responses to different situations or different types of pain.  My troubleshooting guide covers pain, fatigue, mental health, migraines, colds etc.

To give an example, the pain section asks:

  • Where is the pain?
  • What kind of pain is it?
  • Have I overdone things?
  • Have I missed medication?
  • Options to help me: medication, heat, ice, splint, pressure, rest…

Obviously everyone will have different needs which will be met in different ways but even if I only ever used my troubleshooting guide myself, I would still have benefited enormously from it.

As with all humans, relationships and the people around us are very important to our wellbeing and for those of us with chronic illness, they can really affect how we feel about ourselves and how we respond to our pain.  They can also be really valuable tools to help us manage as best we can.  And at the end of the day, our loved ones don’t want to see us suffer if there is anything they can do.  But they also need guidance and if there is nothing they can do, they need to know that as well.  It seems to be that when people start guessing, that’s when the problems arise.

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The Relationship Escalator

I came across the phrase relationship escalator a while back and it really helped me reflect on how I think about relationships and how relationships factor into my life.

The relationship escalator is the belief that a relationship is not legitimate unless it is following the standard upward trajectory: dating >sex>exclusivity>moving in together>marriage>kids>’til death do us part. There is a deeply ingrained expectation that if a relationship is truly “serious”, it will automatically lead to these things.

-Dedeker Winston

I have found it such a helpful concept for self reflection and I hoping this blog post will also help me to solidify my own feelings and ideas and approaches to relationships.

I’ve never felt an urge to be engaged or married.  I am, despite what this blog might suggest, a fairly private person.  If I am in love with someone then to a certain extent that’s pretty much just about the two of us.  I have never yearned to stand up in front of people and declare my love.  So this instantly takes out two stages of the relationship escalator; engagement and marriage.

And I’m not going to have children so that’s a third stage removed.  And if we stick with the escalator metaphor, society starts to ask what the destination is.  If I’m not going to get married and I’m not going to have children then where is this fictional relationship going?  What is the point of it?

Add into this my decision that I will not share a bedroom with someone in the future (I need to be able to turn my audio book or kindle on any time of night and I toss and turn and go to the toilet about a million times, I make a terrible sleep time partner) and society starts to freak out.  What is the point?!  Where would any relationship go?!

My lack of interest in marriage, my inability to have children, my sexuality (bi) and my disability all make it considerably easier to get off the escalator.  I’ve removed three steps, I’m self aware about sex and relationships through years of coming to understand my sexuality and my disability means that a lot of people don’t see me as sexual.  For some people, I’m not even going to be able to get on the escalator (which is probably for the best, wheelchairs and escalators get messy…).

This is a bit scary in some sense but incredibly liberating at the same time.  I have a clean slate, free from some of society’s expectations, to create my own road map for my relationships.

For years I’ve been pondering monogamy and my personal feelings about how it fits with me.  There was a moment I remember very clearly. I was walking along a particular pavement and I was thinking about polyamory.  At that time, my thinking was that I can see that it would be good for some people but wasn’t for me.  At the time, jealousy, attachment issues and lack of self esteem all meant that I could not healthily enter into a relationship with more than one person.  At that time, I had assumed I would always feel that way.  This was a long time ago, pre disability, pre latest mental health breakdown, and things change.

At that point in my life, I was following the script which said that you had to find someone you wanted to be with all the time and they would meet all your needs and you’d live together happily ever after.  I knew I wasn’t looking for my other half – I was already whole and I was quite stubbornly vocal about the use of language which suggested otherwise.  And I wasn’t expecting a disney prince or princess to whisk me off my feet.  But I had still bought into the idea that the mystical person I would be in love with would be everything to me.  And that folks, is utter crap.

No one can be everything for someone else.  You have different friends for different reasons.  The friend you go wild with.  The friend who loves nothing better than a cup of tea and to watch a film on the sofa with you.  The friend who you pour your heart out to even though you haven’t seen each other in ages.  So why do we expect our romantic relationships to be different?

Whilst my imagination has drifted towards open relationships, it wasn’t until a year or two ago that I realised that this was actually an option.  So I’ve been doing a lot of thinking and pondering and learning.  Whilst I feel like polyamory might well be the path for me, I want to know that even if I decide that monogamy is best for me that it is a conscious choice, not default behaviour.  Which is very much in line with my entire ethos.