The platitudes have run dry

If you do a quick google search of ‘At least it’s not cancer’ you will find a range of blog posts, articles, memes etc. by people with chronic illness who have been on the receiving end of this phrase.

It is frequently a platitude offered when people are uncomfortable with the experiences of someone living with chronic illness. It’s an attempt to ‘lighten’ a mood or moment.

The problem is that it belittles the experience of living with chronic illness (as well as those dealing with cancer). While I am grateful not to have a life-threatening condition, the reality is that I will have the issues I experience forever. There is no potential cure.

People understand cancer but rarely understand invisible fluctuating chronic conditions. They believe a cancer diagnosis. They question diagnoses such as ‘chronic pain/fatigue/fibromyalgia’ (as examples).

The blame for not recovering or managing better is placed with the individual. Consequently their (our) experiences are underestimated, belittled and doubted.

My recent surgery* has heightened my awareness of this.

Even if my operation had been a standard procedure, it would still be a big deal to go through. Therefore to have it belittled or overlooked is very hard to experience.

There is an expectation that such a common procedure is easy to deal with for the individual. When it isn’t a standard version of that procedure this may be overlooked because it’s not life threatening and there’s a projected recovery timeframe.

Exceptions to these things are often played down and overlooked. It is the individual failing to recover, or seeking sympathy, after-all.

Am I failing because the breaks in my femur are not healing? No. This is not my fault. However, I am conscious that rather than continuing on that projected recovery pathway, I feel that in fact I am struggling increasingly with every week that passes.

This is because I am trying to work again, along with everything else in life like feeding cats and doing laundry. I rely on supermarket deliveries for shopping and ready meals (when I do bother to eat something besides crisps and chocolate). I struggle to make it into work and leave the house only for this purpose. The exhaustion, tiredness and pain are overwhelming at times. In truth, I have never felt more disabled in my life.

However, the expectation is that things will be getting easier for me. The pain less, mobility greater, etc. So people stop asking how I am, offering support. The comments of ‘it will get easier’ have run dry. Yet I need them more than ever.

 

 

*I had complex revision hip replacement surgery. It entailed a pelvic osteotomy to lower my left hip by an inch, regaining height lost 15 yrs ago and putting mechanics back to how they ought to have been (meaning my body is adjusting to changes of mechanics which is proving tricky). It also entailed multiple breaks to the femur in order to extract the femoral shaft. It was wired together to secure the new hip in place. I lost a couple of litres of blood during the 5 hr op and it was described by staff as ‘a hell of an op’. Almost 4 months on I am still not supposed to be putting weight through the leg for fear that the breaks will fracture as they’re not healing. The surgeon commented that there is a need to consider the next 20-30 years rather than the more immediate future.

Brave new world: Efficiency at the cost of the person?

Last week I attended a pre-op clinic in preparation for my revision hip replacement next month. It’s fair to say that much has changed in the 15 years since I last underwent major surgery. Although some of my experience is new because I now attend a different hospital with different procedures, I was startled by the lack of humanity in the system.

At the pre-op clinic I was shunted about from one healthcare professional to another, clipboard awkwardly in hand with crutches, for them to tick off my list that they’d seen me – though it was phrased that I’d seen them, I wasn’t so sure. At one stage a nurse asked another, ‘Do you have Susanne? Can I have her next?’. I jokingly asked if I got a say…

I’d like to say that this system allowed for person-centred care but it felt like a highly effective system at the expense of individualism. Of the three or four health professionals I spoke to that day (not including my consultant, who has always been wonderfully person-centred in his approach to my care), only one treated me as an individual and took the time to find out what the situation is for me. She suddenly found that I am not a straightforward box to tick off and spent considerably longer with me than she expected. So, yes, I can see person-centred care is costly in terms of up-front resources but the potential is that by taking the time to find out about my individual needs, she will make my post-op recovery faster and easier. She also said it would help the nurses to have as much information as possible because they don’t meet the patient until they’re fresh on the ward from the recovery room.

At this hospital, like others, I will arrive on the morning of the operation, having followed hygiene protocols with body wash and nose cream, to ‘check-in’ my luggage and then join a waiting area. I will meet my luggage at my designated ward – to be determined during the op. While this sounds as though I am jetting off on an all-inclusive holiday I fear the ‘jet-lag’ may be worse and the culture shock considerable.

I am accustomed to being admitted to a ward the afternoon before surgery, meeting nurses, settling in and getting a feel for how things work. While many people may prefer the additional night at home, I think there is a lot to be said for this time to acclimatise – for the patient, their support network and for the nurses to get to know you; especially if you happen to be a slightly unusually shaped box, for example.

Of course, I fully understand and can see the efficiency of this system – I don’t doubt that it is saving money and has met many efficiency targets. However, when research shows that good communication and positive relationships with healthcare professionals and care givers aids our healing process it is hard to believe that this is the best approach. Additionally, research shows that being treated as individuals with our own identities (rather than ‘bed 3, revision hip’) lowers pain levels and heart rates, requiring less pain relief medication and leading to a speedier recovery.

Having had a lifetime of attending hospital appointments and undergoing surgery, I have just experienced the longest period in my life of not having open surgery. Previously I have been nonchalant about hospitalisations and I suspect my concerns about the forthcoming operation are influencing my feelings about these system changes. Perhaps the real issue is that I need the reassurance of familiar protocols? Oh Brave new world…