Effective communication with your doctor when you have a chronic illness

How to advocate for yourself and get results!

At the age of 31, I was diagnosed with Osteoarthritis of my neck and lumbar spine. A daunting diagnosis for anyone, let alone for someone who is young and active. My doctor at the time prescribed me pain medication and told me to leave my career as a nursing assistant. I complied with these orders and went on my way, not realizing that along with a chronic illness comes certain responsibilities. We have to look out for ourselves.

Doctors are people. Most are good people who really want to help you. However, without all the information, they will not be able to help you the way they want to. When you encounter any issues with your health, I suggest to write down a list of all the symptoms you are having, monitoring the time of day they are at their worst. Tune into your body, really pay attention, because it has a lot to tell you. This list will help the doctor decide what tests to order and how to proceed.

Now, there is a time in your journey where you may feel the “brush off”. Proceed with confidence and conviction while always remaining respectful. If you do not feel that your concerns are being taken seriously, talk to your doctor and let him know how these ailments are affecting your daily tasks. Express how you are feeling, again approaching with respect and conviction. Talk to him as you do your partner or parents about what’s going on, cry if you feel like it. Have you ever worked a job where you serve endless customers, one after another, and found yourself not noticing their faces while repeating yourself daily? I imagine for doctors working long hours in their stressful environment, the jaded feeling can come and go. By humanizing your conversation, this will bring the connection back and inspire empathy and results!

Now that you have seen the doctor and assuming your tests have been completed, here comes the diagnosis.. I recommend bringing a family member, a friend or a partner with you. Leave the little ones at home if possible. This time is for you and you need to hear everything the doctor is going to tell you. Bringing another adult with you is key because if you get a serious diagnosis, all you will hear is the diagnosis and then chatter. Drawing a blank is very common as this can be a shock for you. The confidant you brought with you, can take notes and remember most of what is being said. They will also be a comfort to you in this difficult time.

The next part is where I made a judgment in error: I did not research after my diagnosis and I did not ask for a referral to a specialist. I think it is very important to do this because you need to understand your illness and also what processes should be taken after the initial diagnosis. Technically, I should’ve been referred to a rheumatologist (a specialist in musculoskeletal disease and systemic autoimmune conditions) for further examination, but I did not know this. Fast forward four years and I am now being tested for Rheumatoid arthritis as I am now having difficulty with my hands (weakness, pain, and swelling). As I type this, my joints could be degenerating and since R.A affects the organs in some cases, I could run into some real health issues. Since I did not do my research and ask for a specialist referral, it is completely possible I was misdiagnosed. Some great sources are WebMD and Mayo Clinic. Be careful of overdoing it with google, as it can induce anxiety for some. I want to stress that I do not blame myself for this, or even the doctor, but its always good to book a follow-up appointment to ask about your care plan.

If a diagnosis was given without a follow-up appointment, now is a good time to write down some questions you have, make your appointment, and prepare to ask for a referral if it wasn’t offered to you. Now not all diagnoses require a referral to a specialist, but its always good to ask about that.

Some examples of questions to ask would be:

  • What will my limitations be physically? is there anything I shouldn’t do?
  • Is there any natural treatments available for this ailment?
  • Is this a chronic and/or degenerative condition?
  • What is the short term or long term outlook (prognosis) for my condition?
  • What assistive devices or medication can help me have the best possible quality of life?

I also believe very much in counseling or therapy after a life-changing diagnosis. I went to a pain psychologist when I was diagnosed, a lot of universities have free sessions with pain psychologist students, so call your local university and ask! I found this to be very helpful, as there can be a mental fallout after finding out you have a chronic illness at any age.

Your relationship with your health and your doctor should be a two-way street. We cannot expect our medical practitioners to do everything for us. In most places in North America and the world, there is a health care crisis happening right now. The doctors and nurses are burnt out, tired, and HUMAN. In my experience, I have found I get the best results from my healthcare if I’m assertive and most importantly, proactive.

Remember, advocating for yourself is not bossiness, it is assertiveness.

Wife, mother, and researcher of a myriad of subjects. I love to write about anything and everything! Writer for The Startup, Better Marketing, & The Ascent👊

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