A chronic disease can be defined as “a condition that lasts one year or more and requires ongoing medical attention, limits activities, or both”. Depending on the disease, the process of diagnosis can be a scary and lonely time, which may take months or even years to obtain a definite diagnosis. This time period can be life altering, but there are usually ways in which you can help yourself and make the process slightly easier (although this may be dependent on disease severity).
1) Link Closely With Your Medical Team
This is number one for a reason. It is crucial. It is of particular importance in the early stages of diagnosis but will remain key throughout maintenance or progression of the disease. Your medical team will vary depending on your disease, but may include multiple medical professionals such as a specialist, GP, nurse, physiotherapist, dietician, and psychologist.
Linking in with these key stakeholders will be really important as they will help you manage your disease and live your life to the best of your ability.
It may be difficult to have regular contact with a specialist as they are extremely busy individuals, so it is vital when you are seeing them to be prepared with all the questions you may have or any issues which may have cropped up since you saw them last. Many chronic diseases will now have specialist nurses available, such as inflammatory bowel disease and diabetes for example, who are very intelligent and helpful, and will be on hand to answer any questions or concerns you have.
Thankfully, most (unfortunately not all) chronic diseases now have effective medications which can be used to reduce the effect of the disease and improve quality of life. However, any medication is only ever going to work if you take it. For this reason, adherence to medication is of utmost importance. If you are on a variety of different medications, it may be useful to invest in a medication box which separates your medication and divides them based on the day of the week.
2) Avoid Non-Evidence Based Treatments
There are a plethora of non-evidence based, unregulated and potentially dangerous treatment options being offered to individuals with illnesses and being sold as a golden-bullet cure. It can be really difficult for someone with no medical background to discern fact from fiction when it comes to these kinds of treatments.
Add to the fact you are scared, sick, and probably willing to pay any amount of money to get better. Individuals who advertise these kinds of treatments prey off those who are vulnerable and desperate to recover. We see many of such kind of non-evidence based treatments which aim to heal a variety of medical conditions, such as homeopathy, ‘healers’, ‘cancer cures’ and colon cleanses, to name but a few.
If you are ever tempted to try something like this to help treat your condition, PLEASE get in contact with a qualified medical professional first to talk through it. It will likely save you a significant amount of time, money, and false hope.
3) Address Lifestyle Factors
Lifestyle may not be the complete panacea that it is sometimes sold as, but addressing lifestyle factors and formulating new and healthy habits can definitely help with management and progression of a lot of diseases.
Focus on the low hanging fruit, rather than going for intricate details. If I am working with a patient who wishes to improve their overall health and wellbeing through altering their lifestyle, there will generally be five key areas of focus:
Increasing general physical activity levels. This is usually done very gradually and in a safe manner. A combination of resistance training and cardiovascular exercise is usually recommended. Physically activity reduces risk of a variety of cardiovascular and metabolic diseases, as well as improving overall function and quality of life.
Improving diet quality. If you are linked in with a dietician, make use of this. Focusing on getting adequate energy through primarily whole foods to support immune function and fuel your body is going to be the primary goal here. Depending on your condition, supplementation with specific vitamins or minerals may be required. See previous blog on how your food environment influences your dietary habits.
Controlling stress levels. Stress isn’t necessarily a bad thing, but when chronic stressors accumulate, they can significantly impact your health. Everyone will be individual in how they manage stress, but things such as exercise, socialising with friends, meditation, and journaling can all be useful ways to reduce stress levels.
Avoiding smoking. This is one that doesn’t really need an explanation, as everyone knows (even smokers) how deleterious smoking is for health and the many chronic diseases it can contribute to. Knowing something is bad for you however doesn’t make much difference (most of us drink alcohol and eat foods that don’t exactly promote health).
For someone to stop smoking it can be extremely difficult (especially when they’ve smoked for a long time). They really need to want to stop themselves and have an internal motivation to stop. Stopping smoking is brave and should be encouraged, but unless you actually want to stop it is unlikely to be successful. If you are a smoker and would like to stop, discuss with your GP what your options are and what supports are offered.
Reduce alcohol intake. Again, most of us know how bad alcohol is yet we still consume it on a regular basis and in excessive amounts (myself included). The alcohol culture is particularly harmful in Ireland, as binge drinking is very socially acceptable. It may surprise some people, but binge-drinking is considered drinking more than 4-5 drinks in one sitting. It wouldn’t be a surprise for Irish students or adults to have 4-5x this on a standard night out. When done a regular basis, binge-drinking can significantly increase the risk of many common diseases and all cause mortality. There is also a dose-response relationship with alcohol, so generally the less you drink the better, the higher volume and frequency you drink the worse for your overall health. Everything in moderation.
4) Build a support network
Having a support network is highly underrated in the management of chronic disease. You shouldn’t have to deal with this tough time alone. You require physical, social and psychological support. If possible, try to educate your family and friends on your condition and how it affects you.
You may be surprised at how understanding and supportive they can be.
Unfortunately, not everyone has the luxury of having loved ones who can support them throughout this time. If you feel alone, isolated or as if you don’t have adequate support, try to join support groups with individuals who have the same condition as you. You can support each other, empathise, and share stories about your condition and life.
No one should have to go through a chronic disease diagnosis alone.
5) Become an expert
Educate yourself as much as possible on your own condition. By doing background reading on your condition and asking your GP and specialist questions, you can equip yourself with the necessary knowledge on your disease, how to manage it, and how to explain it to other individuals.
This will help you understand your condition better, the side effects, and the potential long-term outcomes. It may also help you to prepare yourself for potential issues if they do arise throughout the course of your condition.
Conclusion
Being diagnosed with a chronic disease can be a life changing and scary time. Everyone will respond differently, and there is no one correct way to respond or act. However, there are measures you can take to manage your disease, improve self-efficacy and quality of life.
“We are like teabags, we don’t know how strong we are until we hit hot water”