Living with Chronic Illness
Be Your Own Advocate
Things can become quite murkey and confusing when you’re confronted with the symptoms of chronic illness and differing opinions of treatment.
Many of us are managing our illness with the help of a multiskilled team of doctors, nurses, and specialists. It can be difficult for all of those individuals to remain aware of what the others on your team are doing for your care and the constant changes to medications and treatments that often come with chronic illness. If you begin seeing a naturopath or a nutritionist it can add another layer to the confusion as your traditional providers may not always agree with, or know, the details of that care.
Adding to that murkiness is the fact that we are all unique individuals and have systems that will react differently to disease and treatments, what may work for one may not work for another.
You have a better chance of avoiding frustration, misdiagnosis, and unnecessary physical pain and mental anguish when you are actively involved in every step of your care.
It is vitally important that you be your own advocate and I have 5 tips to help you be just that!
Tip # 1 Do Your Research...
Most health care professionals have spent years dedicated to their field and to their education, for that they deserve respect. Yet, it’s one thing to respect your doctor and quite another to blindly accept their opinion as accurate and unquestionable.
It can be unsettling to disagree with a doctor or question the treatment suggested by a specialist but just like us they are human, they can make mistakes, and they do not always have all the answers.
Learn all you can about your disease and the different treatments that are available to you. Continue to research and stay up to date on the current case studies and medications. Securing this knowledge will empower you to speak up if something your provider recommends does not seem like the right treatment for you. With the research complete you can better work with your healthcare team on deciding what medications are worth exploring and what ones your body should avoid.
#2 Dont ignore symptoms..
You know your own body better than anyone else.
Don’t ignore the signs that your body gives you. If you suspect that something is not right see your doctor. If that doctor does not take you seriously then get a second, third, or fourth opinion if necessary.
#3 Let your voice be heard…
There is stigma that comes with most chronic illness.
This is primarily due to a lack of understanding and is no reason to be ashamed or quiet about what you’re experiencing and what you need.
Admit when you are confused about your symptoms or a treatment plan. If a medication that works wonders for your doctor’s other patients does nothing to alleviate your symptoms this does not mean that you have failed or have personal shortcomings. Speak up and ask for a different medication. And then ask as many questions as it takes for you to feel comfortable moving forward with the new medication.
Sometimes healthcare professionals can forget to factor your personal experiences and lifestyle into their views about your illness. Share with your healthcare team how your condition is impacting your daily life and relationships.
#4 Stay organized…
Keeping an ongoing list of your symptoms, and the dates you started noticing them, comes in handy when meeting with a new doctor for the first time.
It is also a good idea to keep a running list of your medications(past and present), their dosages, and their effects on you. Be sure to include any supplements and over the counter products you take.
My own list of medications is lengthy but has saved me a time or two.
A couple of years ago I visited a specialist who wanted to start me on different medication. My hazy memory couldn’t place exactly why but the name of the medication sounded familiar to me. Once I was back home I confirmed from my list that I had been prescribed that same pill a year prior and it did not sit well with me. My doctor at the time had insisted that the side effects would lessen if I just gave it enough time. I suffered through many weeks of severe nausea before finally refusing to take that medication any longer. Had I not had my list I may have accepted the specialists prescription and needlessly put myself through more misery.
#5 Remember, God is Your Great Physician…
Being your own advocate can feel like a fulltime job. It requires time and dedication and planning. But do not let busyness, or overwhelm from your illness, be a reason to neglect your spiritual health.
During the most difficult days of your illness it will be your faith that sustains you.