Mental health and wellbeing are incredibly important parts of recovery from physical illness.
Navigating the medical system can be fraught with difficulties. Understanding processes and juggling appointments is difficult enough. But medical patients are trying to do this when they are not necessarily functioning at their best. If you have experienced chronic or serious illness, then managing your healthcare can feel like a full time job.
What it feels like to be a part of this system, as a patient, is often overlooked. People who have felt independent, in control of their lives and decisions, and able to advocate for themselves, are often faced with very unfamiliar feelings.
Whilst many people are fortunate to have an excellent experience of their medical care, it is not uncommon to hear stories of feeling powerless, overlooked, unheard, or confused.
When we are sick we are at our most vulnerable. Being unwell is stressful and can be frightening. When vulnerable, for any reason, what we need is certainty, stability, and recognition of the pain that we are feeling – whether this be physical, emotional or both.
We go to the experts to help us at a time when feeling incredibly vulnerable, and rely on them to make important decisions about our care. We simply do not have the knowledge or expertise to deliver this care for ourselves. And this automatically puts us in a position where we need to rely on others. For some, this in itself is terrifying.
Hospitals are increasingly pushed for resources, and that makes it challenging to attend to the vital sense of comfort, care and security. In a hospital, patients have no choice about when they are seen, there is little privacy, and their space is constantly invaded. One of the biggest frustrations I often hear about is the waiting. When a person is a hospital patient, they can feel they are constantly waiting for someone to come and tell them what decisions have been made, what the next step is, and when they can go home. For most adults, these are decisions they have been making for themselves, multiple times a day, for decades.
It may be a big ask to change the conventions of the medical system. But it’s also important that we don’t just accept this is how it has to be.
Hospital patients need time, they need information, and they need control. Even a small amount of any of these can make a big difference to the experience of being in hospital, or the healthcare system.
Some of the tips below might be helpful in navigating a hospital stay or medical treatment:
· Be prepared – be ready with a written list of the information you need to know. Before your consultation ends, check that you have all the answers you need.
· Be confident - you are entitled to information. Try approaching it from the perspective that it is not your job to understand, but the job of experts to find a way to help you understand.
· Be prepared to educate - you might need to let health professionals know how your mind works. Tell them how you interpret information. If you tend to think the worst, let them know. Give them examples of what you think when told certain information – be specific about what you’re worried about. Like anyone, if they don’t know, they can’t respond in a way that is helpful to you.
· Insist upon control – this doesn’t mean every detail, but ensuring that decisions are not made on your behalf. Ask questions about alternative approaches or timeframes. More often than not, the original recommendation will be the best one for you, but being aware of the options and making an active choice will enhance your sense of control (where, let’s face it, there isn’t a lot).