Because doctors can’t name the illness, everyone—the patient’s family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.
The description given by a leading gastro-enterologist at the Mayo Clinic [of patients with chronic fatigue syndrome] remains accurate: ‘the average doctor will see they are neurotic and he will often be disgusted with them’.
Many of my community – those of us who identify as empaths, intuitives and highly sensitive souls – also suffer from invisible but very real illnesses: chronic fatigue, ME, post-viral syndrome, Lyme, POTS, connective tissue disorders, auto-immune disorders, cognitive dysfunction, endocrine disorders, digestive issues, fibromyalgia, heart issues, long COVID…. the list goes on. I want you to know that I have your back here, and that I understand your frustration and despair when you can’t seem to find the help you need, or when you are not taken seriously.
One of our community recently asked for help around knowing what to ask when she went to see her doctor. She usually becomes overwhelmed during her visits, and often leaves feeling that she has made little headway, and been given little clear help or direction.
As someone who has suffered chronic illness since adolescence (and I am 55 now) I have seen more than my fair share of physicians, specialists and therapists. In a medical appointment time is short. Once you have moved past the first few sessions of taking history, having tests done, and having results come back (and if this ISN’T happening find a new practitioner!) you need to be able to have some kind of treatment path, support or direction to follow.
These are the three questions that have helped me to do that, or to assess someone as being unable to help me in my health journey.
The Three Questions
What is the most important action for me to be taking right now in regards to (insert your most concerning issue eg pain management, energy, etc)?
Apart from you, who else may be capable of managing specialised aspects of my health or who may have new pathways or solutions for me? Can I have a referral to them?
How do you see my care and treatment plan unfolding over the next twelve months? What objectives are you supporting me towards achieving?
This is your health journey, and you have the right to ask questions, and to understand what approach and goals your practitioner is working towards in helping manage your treatment and wellbeing.
You have the right to find someone who is committed to you and your journey, and you have the right to be listened to and taken seriously.
Above all, I want you to know that you need to trust yourself. You know when something is wrong, and being told that your situation is ‘all in your head’ is sloppy medicine. It can take time to find people who can help, but they are out there, so don’t give up on yourself, keep advocating for yourself, and ask these three questions.
My final advice? If possible, take someone with you to your appointment, take notes and have them take notes too, and ask if you can record the session or parts of the session.
I’m thinking of you, and sending love, Nicole xx