Chronic/Serious Illness: 5 Steps to Improve Awareness and Management of Your Medical Care

I have never been diagnosed with a chronic/serious illness.  I know I can't come close to understanding the fear and worry associated with this, but I can understand the impact of chronic conditions on quality of life. About 20 years ago, I was training for a team triathlon and ended up having serious right knee pain.  After much frustration and despair, I withdrew from the triathlon and underwent a scope procedure (arthroscopy) following an MRI. The procedure outcome showed a degenerative condition of my knee cartilage which is possibly the result of a genetic condition.  I was on crutches and in physical therapy following this first procedure.  The pain limited my activity and added to my ongoing frustration and sadness.  I had a second procedure a few years later called OATS (osteochondral autograft transfer system) to replace some of the disintegrating and damaged cartilage.  As time went on, I received numerous shots to the knee joint to alleviate pain and discomfort with the recommendation for eventual knee replacement.  My activity level was greatly impacted, and a mix of emotions often showed up at the most inconvenient times.  This short narrative is not meant to claim that I know what it is like to be diagnosed with diabetes, cancer, congestive heart failure, kidney disease, pulmonary disease, HIV, or any other chronic/serious illness.  The purpose is to communicate that grief and loss as it relates to quality of life come in all shapes and sizes.

Chronic/serious illness are conditions you usually find out about in one of those conversations with your physician when he/she breaches the "bad news".  You know this all too well because you have been experiencing the symptoms associated with some of the above listed conditions.  You can't get things to improve despite trying to work on your sleep routine, change your diet, or enlist various supplements or other alternative practices.  So, you decide to go to the doctor - blood work, physical exams, assessments about your history and current information, and even scans provide your medical team with an overview about what your body has been feeling.  The news that you have not prepared yourself for has been revealed and what has been happening to you now has a name. You are confused because you may experience relief while also feeling shocked by the news, "Wait, I have what?"

Some physicians and other medical professionals are aware of the turmoil that chronic/serious illness diagnoses causes people and may provide the information in an empathetic and compassionate way, while others still struggle with the discomfort of sharing the news and worry about harming the patient.  Your brain will more than likely only hear the first few minutes of the conversation because you might start entertaining thoughts about death, loss, and pain.  You may go to the worst-case scenario immediately without even having all the information.  You leave the office, stunned and terrified. You are unsure who to tell and what to do next.  You may leave the physician's office with prescriptions and follow up appointments with a specialist.  The whirlwind or roller coaster or whatever name you give these next steps begin.  

Understand that although the healthcare system is set up to save you and not cause you harm, but it does not always implement strategies and tools to help people navigate the complex and often confusing system.  Some things are urgent, some aren't, and other things can wait a few weeks or months, but your emotions and your thoughts don't necessarily function like the healthcare system.  I have heard patients on numerous occasions express fear and worry about waiting for follow ups or other tests because of the thoughts that something might worsen during this time period.  This is completely understandable as you have limited knowledge and experience with this diagnosis.

So, what can you institute to help you understand and navigate the healthcare system better for yourself?  There are many things you can do, and I will share several suggestions that I have either witnessed or heard patients report are helpful for them.  It is important for you to understand that you do not have to be alone in this.  You will have a whole team of people around you.  Besides the people in your life who care and love you, you will have healthcare professionals who will be able to guide you, provide you with information, and support you such as your physician, specialist, social worker, nurse, chaplain, speech, physical, or occupational therapist, dietitian, etc.  

Here are 5 steps to improve awareness and management of your healthcare:

1.  Ask questions.  I know the healthcare system can be intimidating and overwhelming. Sometimes the words and phrases used are misunderstood, or processes may be confusing because there are so many moving parts. Your healthcare team has no idea what you do and don't understand unless you ask.  I have heard patients say they did not ask questions because the physician was in a rush or is too busy or they thought their concerns or needs were not relevant or important.  Listen, this is happening to you not anyone else in that room with you. You are the one who has to deal with symptoms, get to appointments, spend money, and live the best life you can, so ask questions.  You can visit caringinfo.org for more information about what information to gather before, during, and after appointments and questions you may want to ask your physician or your healthcare team.

2.  Read.   It is common for people to start researching a diagnosis on the internet, but this does not always produce the most reliable and accurate information. Sometimes the information can be extremely scary and not applicable to you.  I encourage you to ask your physician (and healthcare team) where they recommend you read about the diagnosis. Sometimes the physician can provide you with information you can take home or can print for you the educational materials.  As for the internet, only view sites that are medically endorsed not based on someone's opinion, meaning they are medically reputable sites or diagnosis specific websites.  When you read the information on websites, I encourage you to take notes and take any questions you may have to your next appointment.

3.  Companion at appointments. Since emotions are usually high during medical appointments, it is a good idea to have another person with you or on the phone. There is usually so much information shared at the initial and follow up appointments that it can be challenging to keep up with all the things you need to know.  Our brains hold a limited amount of information at one time, and our attention and focus can be short. These are reasons it is important to have another set of ears listening to the information shared and someone else to ask questions.   Plus, support is necessary for our human survival and optimal for healing.

4.  Keep a notebook/binder.  This is a way to organize all the information and appointments.  A notebook or binder can help you keep tabs on medications, tests, blood work, and your healthcare teams names as well as any information from your insurance.  Again, there is so much information provided after receiving a chronic/serious illness that keeping all the information in one place such as with a notebook or binder may minimize stress related to remembering and recalling dates and treatments, increase your knowledge about your medical care and plans, provide you with a history to share with other healthcare providers, and give you the opportunity to review and track your medical care and plans.

5.  Advocate for yourself.  You know yourself the best, better than anyone.  Your healthcare team knows the diagnosis but not you.  Part of advocating for yourself involves telling your team about you and what is important to you, how this diagnosis and treatment will impact you, and what you need from your team to minimize your stress, confusion, or uncertainty. Advocating for yourself also comes into play as it relates to your appointment schedule, financial concerns, supportive services, and resources.  Your team does not know what you need unless you tell them what you need. If you do not understand something about your medications, treatments, or the plan, ask.  If you need to talk to someone outside of your support system, you can ask for a social worker.  If you are pain or have any other type of discomfort, let your team know.  This is happening to your body, and you have the right to request assistance, support, and clarification about any of the information shared with you.

Learning to live life with a chronic/serious illness can definitely throw some challenges your way but it can also give you opportunities to focus on things you may have been ignoring or to allow you to slow down.  As you adjust to this diagnosis and gaining more understanding about managing it, then you can work towards living your life with quality and purpose.