4 steps to managing chronic illness

I am writing this article based on both my professional and personal experience of working and living with chronic illness challenges and pain.

Chronic illnesses or longstanding conditions can come in all shapes and sizes, but generally affect a person for more than 12 months. According to the 2022 Health Survey for England, 41% of adults have at least one longstanding illness, and the survey coded 42 conditions within the longstanding illness category. So, managing a chronic illness is something that many of us will encounter.

Managing a chronic illness is a full-time job. It can require a transition, a change in mindset, and can be a defining permanent feature of our identity. I will explore four steps that are useful checkpoints on the winding road of living with chronic illness.

1. Diagnosis

Chronic illnesses and symptoms can creep up on us and build over time. What was a slight irritation can evolve into something that impacts all aspects of our lives. One starting point is getting a diagnosis. This is easier said than done for many. Although I can appreciate the NHS for all its wonders, funding for longstanding conditions and the postcode lottery for services and treatment can create a barrier to the best possible management and treatment.

Your first point of contact will most likely be your GP. To aid your GP in being able to help, keep a log of your symptoms and how severe and impactful they are. This way, you can offer very specific insight into your lived experience, which can aid a diagnosis or referral. There are many digital symptom trackers, but a notebook and pen are just as effective. Select whatever format makes it easiest for you to track your symptoms and experiences daily and accurately.

It is coming to light now that there are many chronic illnesses which have gone untreated, and many patients have had their symptoms minimised or been dismissed altogether. An example would be endometriosis. According to Endometriosis UK, it takes an average of eight years and 10 months from a first GP appointment to get a diagnosis. This is why descriptive language is key. Providing your GP or consultant with examples of what you’re not able to do and the impact your symptoms have on your daily life makes it harder to ignore, especially when you have a log of evidence.

Instead of saying “I have trouble walking” a more descriptive explanation would be “4 out of 7 days I could only walk short distances with a walking stick”, “last week I was unable to leave my house at all”, “this is impacting my ability to be independent as I couldn’t even get to the corner shop for milk” or “I have missed 15 days of work in three months and my employer is unhappy with my performance and attendance”.

Feel confident about asking for a referral or a second opinion, or further tests. Again, this is where your knowledge of yourself, your mind and body alongside your tracking log containing accurate data can help you.

2. Other help

There are many health professionals who may be able to offer advice regarding your symptoms or condition, these can include physiotherapists, dieticians, nutritional therapists, counsellors, psychotherapists, specialist nurses and healthcare assistants. There are also charities and local initiatives that may offer information, advice and support. Your GP may be able to offer social prescribing in relation to your needs.

Receiving support from family and friends can be very significant. Letting people who are close to you know what you are experiencing can offer relief and reduce isolation, but there can be a shadow side. As well-intentioned as our loved ones are, they may not fully understand our individual experience. I have often heard my clients say they experience frustration regarding being told to say when they’re in pain. Being in constant pain would mean commenting on it continually, which would be exhausting. This leads to masking our real experience and makes it harder for others to understand. To aid in lowering frustration and to allow those who care to help, be specific about what support or help you would like and be mindful that this may change regularly. Support groups or forums for specific conditions can be a helpful resource of information and understanding.

3. Knowledge regarding your illness or condition

Gathering information regarding your chronic illness or condition is key to understanding it, alongside how it affects you personally. Seeking appropriate sources of information to avoid myths and misinformation is crucial. As a social media user, as soon as I started looking for information and advice, I became bombarded with anecdotal accounts and advertising relating to my condition. Some of this was helpful, even motivational, but some was just exploitation. Being mindful of the difference between “internet truth” and reality can be problematic when we are desperate to seek a solution. Taking guidance from reliable and trusted sources is necessary. Checking professionals’ qualifications and experience, exploring updates regarding new treatments, and not assuming what works for one person will work for you.

4. Acceptance and learning about the new you

Acceptance often feels akin to giving up or being defeated. However, accepting your current limitations doesn’t have to mean you stop striving for improvement. The damage of not accepting our reality, or listening to what our body is trying to tell us, can make symptoms or conditions worse. I know all too well what not listening to my body can do. I pushed and didn’t listen, I ignored the severity and changes to my symptoms because I didn’t want to let it win or beat me, but that had consequences. It also meant I didn’t push for the help and treatment I needed. Working in partnership with your mind and body, grounding yourself, and accepting what you can do and what you can’t, can have a big impact.

Longstanding illnesses and their associated symptoms can be suffocating and invisible to others. Expanding how you view your overall health, thinking holistically and taking even very small steps can assist in managing an illness and diminishing the lack of control experienced. Many of my clients, as well as myself, have found comfort and fulfilment in a hobby, which could be anything you find engaging, that offers a sense of satisfaction.

Attending to your mental health by exploring meditation, mindfulness, or counselling can help your mind and body connection and the management of pain. Having a reasonable expectation of your physical abilities, not pushing yourself too hard to the point of moving backwards. Consider your social network, possibly trying to expand it if you’ve felt isolated. Any small step in one area has the potential for helping elsewhere, as our physical and mental aspects are closely connected.  

Summary of tips:

• Get a diagnosis, push for one if it isn’t forthcoming or doesn’t feel right.
• Create a log of symptoms, including examples and grading any pain.
• Provide your medical professional with descriptive examples.
• Do you qualify for any social prescribing initiatives by your GP?
• Seek help via broader health professionals, family and friends, and support groups.
• Arm yourself with reliable knowledge about your condition and treatments.
• Acceptance and listening to yourself, getting to know the new, changing you.
• Exploring looking after your holistic health – physical, mental and spiritual.

Above all, recognise that it is an effort to manage a longstanding illness, which can take a toll on your physical and mental health. Advocating for yourself is especially important.