For anyone you know, care about, or look after with a pain related illness, a widespread arthritic condition, fibromyalgia, M.E. or similar long term “chronic” symptoms.
Most of us would probably agree on one or two things.
The term chronic is an unhelpful and misleading phrase, which lumps people together who simply have had an illness a long time. Chronic reads tragic, a bit sad and not quite figured out. The n.h.s, due to its inability to treat the whole person, fragments their parts to far flung departments, the more parts going wrong, the more departments acquainting themselves with a version of the person they treat for 30 seconds.
Nobody ever seeing the whole picture and joining up the dots.
When your body doesn’t work it leaves you frustrated, and struggling to know where you slot into a world you could previously easily move about in.
You either sink or swim. And frankly some days the tide is against you.
Pain and immobile joints are exhausting. Being tired and feeling like you have flu, without the runny nose is common feeling, some days rendering you unable to lift limbs or keep awake until teatime. You know it will be different tomorrow, and you hold onto a fluttery butterfly of hope that the pain volume will be back down a bit. Those days are the toughest and might make your person sad. It is also really hard to describe the level of intense pain you have, to anyone who hasn’t felt it themselves. Similarly, if you look relatively ok, being believed and understood can be tricky. If your person has mental health or social anxieties as well, they might struggle to articulate the circle of needs they have and how people around them might help.
Feeling you can’t mange physically can be very isolating. Seldom is there support for the feelings this can create. Whilst we try to create that in a practical way, it is different behind closed doors. Your partner and your children know you so well that they might not notice your day to day changing needs, or have the ability to understand them. Some friends might not see you in six months or a year and can’t be blamed for not knowing your deterioration and escalating needs. Check with your poorly person exactly what they are going through. It is a sure thing they haven’t wanted to bother you with the details.
You can guarantee your person doesn’t tell you a fraction of the times they are in pain. Not even close. So when they do, the Gods just turned the switch to mega-high and now, they need you to listen.
If they have a you to listen/help/share and support, then they are really really lucky.
It is incredibly hard for your once independent loved one to ask for help. Nobody likes to feel they can’t be superhuman. But being human can sometimes feel like an enormous struggle too. If they ask you to help it might have taken a lot of biting back of their dignity and sense of self. Be kind and don’t stick an arrow over their heads reminding them of what a big favour you’re doing.
Please don’t make your person feel guilty if they can’t make an arrangement, climb a hill, drive to a venue, stay awake past eight pm, or in my case sometimes even get from my car to the school door. Some days our bodies are letting us down badly, and to feel we somehow let down other people because of it, is a load too heavy to carry. ( Especially on crutches!)
Hands, hips, knees, spine.. Every day can be a lottery, especially when it gets cold and damp. I am time limited with painting, to the sunny days and months.
If your loved one uses a wheelchair, it can be a whole other set of issues. Being looked down on can feel like you are being ignored or bypassed when decisions are made. In crowds it is really hard to be pushed slowly like you have lost your va-va-voom and watch life zoom past you. Be aware of your friend or partner if they sometimes need help to get around, it can make them feel less than the person they used to be and humiliated to ask for support.
Having to ask repeatedly for help is really tough. You kind of need someone to know, and not to dramatise it. If you can help someone, just be a subtle superhero.
Without good support, I have seen people stop asking for help, creep slowly into their shells and stay there. In winter, when pain gets worse and bodies play hard ball, this can lead to people becoming terribly isolated and introverted. Then depression hits and you know how hard this can then be, impacting on health even more.
If the person has a carer, especially if it is a younger person, they are connected in a way you might find hard to understand. Little things are big things to a person who can’t bend/walk/stand for long/use their grip or put their own shoes on. Quite rightly that carer needs support and their own space, but your friend will have a gap in their abilities to achieve certain things that they are used to getting help with, if that carer is away for a while. It might take much longer for example to get dressed, get the pets walked and fed or clean their shared home. The carer too has massively mixed feelings about their charge. Whilst carers can get a break, the guilt/co-dependence and shared care people have in their micro universe is tricky to unpick.
Your friend will simply be grateful you still see them as them, without the chipped away bits, the essence of who they were before disease or illness struck.
For someone in pain, everyday activities they used to take for granted are like mountains and therefore it is incredibly important to respect how they still keep themselves tidy/organised and want to do normal stuff. And achieve their creativity or work.
For example. It will be painful and arduous to Hoover carpets, get to the back of a bath or under toilets, under kids beds to clean out the mouldy plates. It will be very hard to carry laundry, sometimes carrying food to dinner tables, making beds or doing up buttons and opening jars. Any help is good help, as long as the assistant doesn’t make their mate feel guilty or that they need to ask. My best friend just grabs things off me and organises my fridge. Another put my entire post barbecue leftovers in Tupperware, housed all the cushions in the bunker, folded the chairs and stashed the wine bottles in the recycling. All tasks which would have taken the most part of a day to unpick.. She did it in twenty minutes whilst ordering me to drink tea.
Your person is probably over compensating in some ways, because they can’t do other things. Let them. It’s their way. And their gift. Sometimes they might not say the thing they wanted to, or ‘be’ the person they hoped they would be that day. All a person in pain and illness wants, is to be treated with respect and to be quietly supported. If and when they can show their love back, it is almost certainly with utter gratitude and a deep deep relief that they have you in their life.
To my friends now and in the future, thank you. I am very lucky to have you, and (most days!) my small person is my absolute rock. Creating an environment which welcomes folk in need of a bit colourful distraction is the start of our journey. I wanted to share this as I am in the position of both being and supporting disability in different ways. In the act of helping in whatever way we can helps us too, and makes us choose gratitude over giving in.
See you soon. Look after yourself and each other xxx