I feel like I am in a grey area when it comes to my health, don’t you?
In the UK I hear lots of rhetoric in politics about how mental health needs to be a priority and disabled people with profound disabilities should already protected (are they?).
I can’t help but feel that invisible chronic pain in anyone below 60 is still an elephant in the room that few in politics, media or health seems to be talking about or addressing.
How much regular help do you get with a chronic illness? Very little
I had certain expectations about how the the healthcare community would care for me when I was diagnosed with a long term illness. I thought I’d have a consultant I would meet regularly, or an invitation from my GP surgery to attend some sort of clinic.
Instead I’ve been left to manage things for myself. Apart from surgery (which I get on average once every four years), I’m figuring out chronic pain for myself. That seems to be the case for most people I come into contact with.
While that can work for some with pain management techniques becoming the main way we manage, it would be nice if we had some way of explaining to patients how people who have lived with this in the past have managed. Some ideas of where to start would be good, and the lack of information is overwhelming.
I’m not alone in this, this seems to be the norm for a lot of other people too. I’m not very well at all, but I’m not unwell enough to receive any ongoing support from anyone.
In the UK this means organising your own treatment, finding the things that might work, paying for them or more usually spending months on the waiting list for care.
So in many regards we share some of the same issues as mental health. Both are not believed, due to appearances, carry stigma, are not easily observed. As such, we face very long waits and disbelief when it comes to treatment.
I first learned this when I attended the Expert Patients Programme for chronic pain. I met a lot of different people from lots of different backgrounds all dealing with very different types of long term physical and mental health issues. We have the same problems, we’re all invisible to those in power and we manage our illnesses unseen from everyone else.
Patients have to fight for everything
People who say that mental health is the poor cousin of physical health do so with the assumption that physical health gets better treatment.
Acute physical health does have brilliant healthcare pathways in my experience. To the extent that if you try to talk about healthcare to people without long term illnesses, they don’t believe your story, or think that you’re being insincere (or worse, ungrateful).
The average patient in gets to see their doctor for an average of three hours a year, the only person left to help you in the meantime is you. That’s a lot to wrap your head around if you’re newly diagnosed. You’ve grown up with a medical system that’s largely been able to fix all of your problems before now, the news that that’s not going to work anymore takes many years before it finally sinks in and comes with acceptance of illness.
It all happens to someone else right?
I think there’s some merit to this. I recently hosted a women’s health talk at work about endometriosis awareness and many of the attendees were shocked about how common it was. It opened doors to conversations that women didn’t think they could have before. I got approached at work by women who’d lived with the disease silently through their careers and hadn’t told anyone in the workplace.
Here are some shocking facts about endometriosis prevalence in the UK from Endometriosis UK.
I think a chronic illness of some kind (be it physical or mental, or both) is so much more common than most of us appreciate. We are a society based on appearance, and if there’s no visual clue to someone being unwell (or if the clue is too subtle) most people will presume everything is OK.
Awareness is low
There’s no doubt that there’s a mental health crisis around the world, but people talk about long term physical health problems like it’s all solved – it isn’t. It’s not even close. Both need to be worked on together.
In analogies to talk about how mental health is talked about, people say you wouldn’t be unkind and disbelieving about someone’s physical health. You wouldn’t tell someone with a broken leg to get on with things, and think positive.
Only it happens all the time – to people living with physical, invisible and long term, illness. It happens every day and it’s all too often forgotten by everyone not in that group.
I think that’s really sad, but without greater awareness I don’t see this reality changing any time soon.
Hello I have been living with this illness for over 20 years and I don’t know how to live with it anymore. Being in pain all the time and blowing hot and cold I sometimes wonder if I’m going crazy and at other times wish I wasn’t here. I just wanted to say I could really relate to your article.