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My 7 Responses to Unsolicited Medical Advice (and 5 Ways You Can Support Me Instead)

Many people who live with a chronic condition have received advice from well-meaning friends and even strangers about their health. Often though, the advice is absurd, containing no valid information based on scientific facts despite the person offering it believing every word they speak.

I think, “If only a cure was that easy,” as I listen to talk of magic juice, vitamins, exercise and diet ad nauseam.

I was told by a stranger at a social function that ginger would cure me of my neurological problems. I quietly listened, smiled and exited the conversation as gracefully as possible. If I had the opportunity, however, this is what I would say to those who insist on offering medical advice without invitation:

1. Thank you for your interest in my health. I understand you believe what you speak to be true because you or someone you know has the exact same diagnosis and it was cured by (insert advice here). Please understand: if the solution was this easy, I would stock up on ginger, vitamins, juice or whatever else you are advising. And the dozens of doctors I saw pre-diagnosis would be thrilled to hear about a cure. Unfortunately, it is typically not that simple and claiming such is not helpful.

2. Understand that each person’s diagnosis is different. There are about 70 million cases worldwide of dysautonomia, the deregulation of the autonomic nervous system, with many variations of the disorder. My family has three people diagnosed with this neurological condition and each has varied symptoms and treatments, despite sharing genetics.

purple keychain with medallion next to blue pill box

3. Realize I am working hard each day to be well. It has taken countless hours of trial and error to get to the treatment regime I use. And it has been frightening at times when I had to try new medications with mile-long lists of side effects. If I did not try these options, however, nothing would improve.

4. I don’t enjoy taking eight prescription medications and several vitamins daily, but the alternative is crazier blood pressure readings and the inability to walk straight due to dizziness. Please do not suggest an all-natural approach to symptom control. If it was that simple I would have tried it years ago.

5. Do not say if I just pushed myself, exercised or (insert advice here), I would improve. I push myself daily to get up, shower and dress. If I am afforded the chance to leave the house and do an activity, this is an added bonus. With the colder weather arriving it will become more difficult to regulate body temperatures and go outside.

6. Don’t tell me I look too healthy to have a chronic illness. Many of my symptoms are invisible. You cannot see my blood pressure drop and my heart rate increase, causing nausea, headaches and other symptoms. Often I smile, despite these issues, but they are most unpleasant.

7. Do not suggest my problems are stress-related and yoga, mediation or another activity will cure me. We all have stress, and each person handles it differently. I do several things to reduce stress. Certainly, I may feel worse with added stress, but stress is not the cause or solution to my autonomic dysfunction.

Living with a chronic condition (or two, or three…) is a balancing act. I must choose wisely how to expend energy, as once it is depleted, it may take a long time to replenish. And while offering advice might sound helpful, if you want to support me perhaps you could try one of these suggestions:

1. Respect me for where I am in this medical journey. If it is early on or if I have been dealt another problem, I might be sad and cry. Or perhaps I use humor to laugh about the total absurdity of my diagnosis. Either way, please listen and stay with me. Losing relationships is one of the worst aspects of chronic conditions.

2. Acknowledge the effort it takes to persevere. A dear friend told me recently she was proud of me after I planned and hosted a fundraiser for Dysautonomia International. She also stood by and readily helped throughout the night with any chores I needed her to complete. These efforts were invaluable.

3. Tell me about your life and how you are doing — your struggles and your victories. I want to share in your life.

4. Living in the world of medical appointments and procedures can get lonely. Call or text once in a while and ask when (not if) you can stop by. Company is a real treat and oftentimes we don’t have the energy to go out for a lengthy visit. Offer to take us out for a short time. Laugh, listen and talk with us.

5. If you read about a medical option that may be of benefit — and is from a reputable site such as Mayo or Cleveland Clinic — tell me. This can be offered by saying, “If you are interested,  I read a scientific report about (insert condition here) that may be of interest. Would you like to hear it?” I shared with a friend a study I saw from University Hospital, Case Western in Cleveland, Ohio. It noted stationary biking may help those with Parkinson’s disease. She took this information to her neurologist, he concurred and she bought a bike.

It is tremendously difficult living with a condition that will be lifelong. Understand we try to enjoy life and really treasure those people who stick by our sides and love us, despite our struggles. With a little flexibility on both ends, our relationships can thrive.

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