Around 15 million people in the UK have a diagnosed chronic illness and recent research indicates that this number is only going to increase. In the UK, the most common chronic illnesses are asthma, diabetes and coronary heart disease. The facts are that we are living longer but we are also living at a more sedentary pace than at any other time in human history. It’s argued that this is increasing our risk to some chronic illnesses.
What these statistics tell us is that there is a high likelihood either we or someone we know is going to face a chronic illness diagnosis at some point. We know that getting such a diagnosis is a life-changing thing – but how exactly do we adjust emotionally to the fact that we now have to live with a disease forever? Every chronic illness is different but there are a few key pieces of advice that can help anyone who has been newly diagnosed.
- Accepting that life is now different. We all have our own process that we go through when it comes to accepting bad news. Some of us take it on board a lot quicker than others. Some of us may try to ignore or deny what we’ve been told. There is no right or wrong way to react. Giving yourself space and time to get your head around your diagnosis is important. However, it’s also important that you do start to recognise how life might now be different. For example, some sufferers of diabetes know there are certain foods they have to avoid now or they have to acknowledge the fact that being medicated now has to be a part of their life. These are big changes to get your head around so you are allowed to feel anger, hurt and even denial before you come to acceptance. Acceptance is important to get to because it will help you carve out a healthy mindset when it comes to managing your long-term condition.
- Medication adherence is key. This one may sound like the obvious is being stated but it’s included here because the obvious doesn’t always get acknowledged! Studies in the UK have shown that there is a high non-adherence rate to prescribed medication, with it being upwards of 50% in some cases. There are lots of reasons why people don’t adhere to medication-taking but a common one for people who have newly been diagnosed is that they’re just not used to it. This makes a lot of sense as often, those who have been diagnosed are going from taking medication every so often to every day. However, we know that in chronic health problems, taking medication as it’s been prescribed is going to be key to maintaining good health and help avoid deterioration and hospital visits. It may be that you will need to set yourself reminders to take your medication until you can get into a routine. It may also be that you feel unsure about taking medication and you might want to discuss what you’ve been prescribed with your GP in greater detail before you feel confident about it.
- Lifestyle changes are just as important as medication adherence. We know that the majority of long-term conditions in the UK are preventable through lifestyle factors such as diet and exercise but lifestyle factors are also key to maintaining good health when diagnosed. Taking medication alone is not going to be enough. Exercise, diet and reducing any lifestyle habits such as smoking that may not be helpful to your physical wellbeing is going to be key. We often have cases where people adhere to their medication regimen but still find that their blood pressure isn’t great, or that their symptoms of heart disease don’t improve. Managing any long-term condition is one hundred percent a balance between medication and lifestyle changes.
- A diagnosis is hard work and will be tough on you (emotionally and physically) so self-care is important. If you’ve read this far down the list then you’re probably starting to get a picture of just how much is expected of you if you’re in this position. It is a lot and it is OK to acknowledge that it might be overwhelming or very hard work. One of the best things you can do for yourself during this time is to find ways to engage in self-care. Self-care means different things to different people. For some, having half an hour alone to read a book or having a relaxing bath is an act of self-care. For others, taking a weekend break to the countryside to spend time in nature or spending time with loved ones is an act of self-care. Essentially, self-care is an act of nurturing your body and mind. However, it’s also important to acknowledge that self-care is a buzzword that’s easy to talk to about but often very difficult to put into practise. If you live a busy life and have a demanding job or children/people depending on you then it can be understandable that getting time for yourself is just not something you can find space for. This is where you have to think about prioritising and recognising your health is a priority. Support for loved ones in the form of babysitting or other ways they can lend a helpful hand can be a great way to get the time you need to yourself.
- Speak to other sufferers. The Internet is a wonderful thing in that it allows us to connect with people we might never encounter in our day to day lives. There are a lot of great forums for chronic illness sufferers covering everything from diabetes to irritable bowel syndrome. These can be great spaces to get more educated about your illness but also to meet others who may be able to relate to things that people in your life can’t relate to. Being understood is always a good feeling.
- Finally: remembering that you are still in the driving seat, even when it doesn’t feel like it. One of the most difficult things about a chronic illness diagnosis can be the feeling of having no control over what is happening. You have doctors and specialists and loved ones trying to advise you this way and that, you’re expected to make all these grand changes and you’re expected to live with the unpredictable nature of chronic illness symptoms. However, finding what you can control and be in the driving seat for can make all the difference. Reading the above list, we can see that there are a lot of things where we have the choice and where we are in control – what changes we choose to make, how we choose to make them etc. We know that those who take a proactive role in their care tend to fare better than those who don’t.