Chronic illness can make it challenging to live a meaning-filled life, especially when dealing with chronic fatigue. However, by talking openly about your symptoms with your medical team, you can take an active and engaged role in your disease management.
I struggled to make my voice heard by some of my doctors and nurses. It was easier sometimes to sit back and hope they would get things all figured out. But, the truth is, you are the expert on how your chronic fatigue is affecting your life, so doctors and nurses must hear your voice to help effectively manage your disease.
Once I learned how to talk to my doctor about my chronic fatigue, he listened to me and valued my observations and information. This blog is about what worked for me and hopefully will help you too!
Ask questions
It is important to remember that you have a right to know and ask for more information. Your doctor works for you, after all. The questions I asked included:
- What could cause my symptoms?
- Are there medications that can help the symptoms?
- What are the side effects?
- How long am I on the medication before determining if they are working?
- Is there an alternative or complementary therapy that may help?
- Are there things I can do to make my fatigue easier to deal with?
- What foods should I avoid/eat more of?
- What types of exercise are best not to make the fatigue worse but help?
- What else can I do to control my symptoms?
- How long does a flare-up of the condition typically last?
Record things
I started carrying a small notebook to jot things down as they occurred because sometimes chronic fatigue means dealing with brain fog. Brain fog can make it nearly impossible to remember anything; at least, that’s been my experience.
Things I recorded in my notebook included any questions that came up before an appointment. By putting them in my notebook, I could remember to ask them when I had my appointment. I also made notes when I noticed how certain exercises, foods, or drinks impacted the degree of exhaustion I was feeling. Knowing I had things recorded in one place made it easier to bring things up in my appointments and provide clear answers about symptoms and how my disease was behaving.
I used the notebook to write down the answers I got to my questions from the doctors and nurses. This way, I had time to revisit the information when needed because sometimes I’d forget half of what had been said.
I also asked for a follow-up email going over any new medications or routine changes. Typically, my doctor would send this about a week after the appointment.
Using Analogies
Sometimes you will have to use analogies to help your doctor understand what you are experiencing, and that’s fine. For example, I recall telling a nurse I was there because I couldn’t get enough sleep, and my body felt as if I were encased in concrete. I’m sure she left laughing at me, but it helped my doctor understand how my symptoms made me feel.
Bring a Trusted Friend or Family Member
Don’t be afraid to bring a loved one or close friend with you as a second pair of ears. There were times someone caught a few small details that I had missed. I also let people I trusted act as an advocate for me. This allowed them to share their observations with the doctors, which was helpful.