6 Tips to Always Be Prepared for Your Chronic Illness
Last updated: September 2023
As people with chronic illness, it is important to be proactive. There are many steps that one can take to do this. We are our best advocate and, as we know, doctors might not always tell you everything you need to know. If you are new to the condition, they cannot possibly tell you every treatment, at once. They may not know of the newest procedures or medications. Doctors and nurses will sometimes give you the basic information and go from there. Here is how I work around this:
Check out verified medical sites about the condition. Some common places that are trusted sites are places that will have .org or .gov at the end. In school, for my medical training, we were always told to stay away from Wikipedia. We used medical journal sites, information from the Center for Disease Control, The National Institute of Health, and places like the Cleveland Clinic or Mayo Clinic sites. There are many other sites that are trusted as well such as sites dedicated to the condition. For instance, if you have a stomach condition, you want to go to sites that specialize in that. For migraine, head, or brain conditions, you want a site that is dedicated to those.
You want to know the ins and outs of your condition. Information that I look for may be questions such as the following:
- “What will this affect in my body/my life?”
- "What are the common diagnostic tests to confirm or rule this out?”
- “Will the symptoms increase as time goes on?”
- “Can it be cured?”
- “Are there treatments available?”
- “Is this a common disease?”
- “Who is the best specialist to treat this?”
Talk with your provider. Let your provider know of any concerns or questions that you have. Do not be afraid to talk with them. They are there to help you with the condition. Be prepared by making a list of things on your mind about the disease. We know that our time, and theirs is valuable, so with a list, you have what you want to mention already in front of you.
Something that I have run into with several providers and conditions is that they do not always look at your full problem list or allergies. We have to stay on top of that. When a doctor gives you a prescription, before you take it, make sure to look at the interactions. I have had to call pharmacists and doctors to inform them that I cannot take a particular medication because it is contraindication due to another condition, or medication, that I am on. Do not be afraid to ask for something different.
Make your advance directives/living will. Many may not think this is important, but I believe that it is. Those with multiple chronic conditions or medical allergies especially, will benefit from having these documents in place. I have never had to use this, but have had them since 2013.
I have though, had several close calls in which having these documents would possibly prevent me going through anything that I would not want. I have had anaphylaxis, but fortunately, I was still at the hospital and was treated appropriately and quickly. Last year though, I had a severe reaction to a medication for something that we would think is no big deal. It was an infusion for osteoporosis. Well, it caused so much damage to my body where I had multi-organ failure, metabolic acidosis, coagulopathy, and to the point of needing dialysis if my numbers dropped two more points!! I was slurring my speech and my voice was taken away due to the muscle damage temporarily.
Why should we be prepared for chronic illness?
This is why I say to be prepared. We never know if, or when, we will be in a place where we can not make decisions on our own. Being prepared, will make that much easier. No one is promised tomorrow and being proactive is better than hoping nothing goes wrong.
In the past year, has insurance made it difficult to get your migraine treatment?