Life with a chronic illness
When I was 14, I was diagnosed with a chronic illness; SLE lupus for anyone who doesn’t know me, and it changed me. It changed how I approached studying, working, and even day to day tasks like cooking, cleaning, and even bathing.
Sometimes the hospital becomes your second home – even just the emergency department. I certainly have done a fair number of stints in wards and emergency. I’ve learnt to bring my pillow and security toy with me whenever I check in to the hospital and sometimes even pack a bag if I “have a feeling.”
Doctors’ appointments are a large part of the weekly schedule and clinical tests become part of the normal routine. Blood tests are so normal it becomes another task to check off the to do list, like doing your groceries. In fact, my mum and I have a record of tubes they take (mine is 13 in one sitting).
What is a Chronic Illness?
Chronic illnesses last a long time, usually over a year. People with chronic illnesses often need ongoing medical care and have difficulties doing day to day tasks. Chronic illnesses could include diabetes, chronic lung diseases like COPE, arthritis, or chronic fatigue. They often:
Occur suddenly or gradually at any age
Flare up from time to time
Affect quality of life
Cause physical limitations or disability
Can worsen as you age
Some people consider mental health issues as a form of chronic illness although as someone who lives with both a chronic illness and mental health conditions, I personally choose to see them as separate things. There is a lot of use of the chronic illness spoon theory used by people with chronic mental health issues (particularly depression) which I personally disagree with. I think it minimises both those who suffer with ongoing physical health problems as well as symptoms of mental illness. While I realise there is some overlap and comorbidities, I personally think they should be recognised as separate ailments. But again that is just my own opinion based on my personal experiences with both physical and mental health issues.
Why can coping with a chronic illness be so difficult?
When you have an acute illness like a cold, you know you’ll be right as rain after a short period of time. People living with chronic illnesses don’t have this luxury. It may never go away and can disrupt your life in numerous ways.
Effect of a Chronic Illness
Chronic illnesses all have disease-specific symptoms, but may also bring invisible symptoms like pain, fatigue, and mood disorders like depression. People with chronic illnesses often have to do certain things to take care such as taking medicine or doing exercises.
Pain and fatigue play a frequent role in my day-to-day life, although I do have a wide variety of other symptoms. To manage these, I take a lot of prescriptions, must follow up constantly with doctors and take the days as they come. Keeping up my health management tasks causes me a lot of stress in my day-to-day life which means (ironically) more stress and anxiety. Some sources of my stress (specific to my illness) include:
Uncertainty about the future
Unpredictability of my illness (despite the nature of my stability
Disabilities
Financial difficulties
Understanding your Illness
It’s very important to understand your illness when you’re first diagnosed. By getting to know and understanding what’s happening in your body, it may help you feel more in control and be able to make informed decisions regarding your own care. Ways I keep informed about my conditions are:
Doing research – using credible websites to learn about what the illness can and is doing to my body and how different treatments work
Talking to other people with my illness. I use both face-to-face and online support groups
Keeping a symptoms journal – I do this on paper as I find writing notes can be the most helpful for my memory. Recording symptoms can help keep track of how you feel over time but also helps doctors understand what life is like outside of the appointment. I also recently bought a therapy book to help with my chronic mental health issues.
Despite being only 13 when my first illness presented, I spent a lot of time researching and talking to doctors about my symptoms and what it could possibly be. I joined support groups after I was diagnosed. As I’ve developed more illnesses and symptoms, I’ve continued to do a lot of research – especially when I’ve found the doctors to not be as helpful. I also have been keeping symptoms journals for the last 4 years as I’ve been working on getting my act together.
Making Life “Better”
The most important step is making sure you seek help as soon as you feel you’re less able to cope. If you take action early you can understand and deal with the effects of living with a chronic illness – of course this isn’t always possible, especially if medical professionals aren’t the most supporting.
Learning to manage stress can also help maintain a positive outlook on life. The help of a mental health provider can be incredibly useful in managing life with a chronic illness as they can provide strategies to help you regain a sense of control and improve your quality of life. They can also be particularly useful if you suffer from depression or anxiety as a comorbidity of your illness.
There are other things you can do on your own that can help. These include:
Eating a healthy diet
Getting as much physical exercise you can – within your means
Exploring stress-relief activities like meditation
Letting go of unnecessary obligations
Asking for help when you need it
Staying in touch with friends and family
In my experience, I’ve had to relearn my relationship between myself and my body as well as my mind and body to know how to self-manage my illness. Being chronically ill has made it difficult to look after myself and I have had several friends decide to leave my life which in hindsight is for the best (although it stung at the time). I know I don’t always take the best care of myself because of my illness but I try. And if you live with a chronic illness all you can really do to “make life better” is to try your best which some days is better than others.
What kind of help is available?
There are many options finding help for chronic illness. Your health providers may be able to assist you as well as community options including support groups, social workers, and individual counselling.
One of the most helpful things I’ve found is having a GP (General Practitioner) who you feel comfortable with and can trust. They are able to arrange and communicate between specialists and help you stay on top of symptoms and medications especially when specialist appointments can end up being months (sometimes years) in-between.
Support Groups
Support groups are useful in sharing experiences with others. They provide an environment where you can learn new ways of dealing with your illness from other people’s coping strategies. You may also want to share your own approaches. They are especially useful in understanding you aren’t facing hardships alone and nowadays there are several online and in person options for group you can join. I honestly find my support groups - especially my in person support group to be really helpful as we’re able to discuss issues that have come up for us and share like experiences and know we’re not alone. Chronic illnesses can often feel really isolating, something I’ve found having been diagnosed at such a young age.