I’ve spent a lot of time during this last year hearing stories from women with chronic, long-term illnesses.
I’m not talking about colds that won’t go away. I’m talking about women who can hardly get out of bed, who can’t drive due to pain or frequent seizures, or migraine headaches, or can’t hold a job because of crippling fatigue. I’m talking about chronic illnesses that are challenging to shift in any positive direction.
I’m talking about things like Fibromyalgia, Ehlers-Danlos Syndrome, Lupus, Chronic Lyme Disease, Mast Cell Activation Syndrome (MCAS), Hashimoto’s or Graves disease, Irritable Bowel Syndrome (IBS), Crohn’s Disease, Endometriosis, Chronic Inflammatory Response Syndrome (CIRS) (mold and biotoxin illness), and often times, many of these conditions occur together.
And these women often look “ok” on the outside, so the people around them, including their doctors, don’t necessarily believe them when they explain how difficult life is, how hard they have to work just to get dressed.
And though many of these courageous women have tried everything they can think of to feel better, they only make small gains, if any.
But one woman last week told me that she wished there had been a fact sheet for her that helped her know what questions to ask her doctor, because she noticed there was a steep learning curve after her diagnosis. It took her some time to get educated about how to work with her doctor.
As a Functional Nutrition Coach, I walk the wide-open space between the diagnoses and basic instructions physicians give their patients to manage them, and the down-to-earth, day-to-day behaviors that patients need to make to support their wellness.
This is nowhere more important than with chronic illness, but most of these suffering people aren’t given an appropriate road-map to follow. And though many people can only make small gains in their case, when you are bed-bound, small gains may give you the edge you need to experience a better quality of life.
Here are 5 questions I think are useful to ask your doctor, when you have a chronic illness:
1. Will the treatments (medications or therapies) you are recommending reduce symptoms, or will they lead to remission? What are the alternatives?
Before agreeing to make use of pharmaceutical or other treatments, it’s important to give a full informed consent to your doctor, so that you fully understand the risks and rewards of the treatment. To clearly decide to invite a treatment into your body, you need to understand what each proposed treatment is aiming to do, and what the possible side-effects may do to your body. Will they reduce your symptoms at a cost of organ damage? Long-term effects? Will the side effects create a need for additional medications that may be harmful?
If your doctor doesn’t know how to answer these questions, you may want to explore the current research yourself, or ask your doctor if they would be willing to help you do this.
Remember, you get to decide whether to agree to a treatment. Be fully informed and educated about all the possible outcomes. Ask lots of questions, and work with your doctor to find treatment paths that provide the greatest benefit with the least harm.
2. Are you willing to communicate with other providers on my team, even alternative health providers? How can my other team members best connect with you?
Doctors routinely communicate with other providers that they have referred their patient to, to follow up on the results of that consultation. But some are not as willing to interface with allied health providers like nutritionists, chiropractors, acupuncturists, and so on.
But people with chronic illness often have many doctors and allied providers helping them with their care. Having a connected team provides a better outcome for patients, and allows the team to all work together in the best interest of the patient, and to better understand the full picture of their situation.
You can request a release of information form from your doctor’s office, to facilitate the conversation. Your doctor can’t legally communicate with other providers without permission from you.
3. What does the literature say about my diagnosis?
Many people with chronic illness spend time researching the medical literature about their diagnoses, and this is a good thing, because many medical doctors aren’t necessarily well-versed in your diagnosis, especially if it’s uncommon or they haven’t yet encountered it in practice. Their practices are often so busy that they don’t have time to read up on the latest research.
It’s estimated that clinical research takes an average of 7-10 years to trickle down to common medical practice.
Asking this question may encourage your physician to look into your diagnosis, better informing your care. If they are already informed, then you are now able to have a higher-level conversation about the choices available to you.
4. How do you feel about me trying alternative treatments before resorting to more intensive solutions?
This question is for readers who would like to avoid medications if possible. Because conventional treatments often come with unintended or unwanted “side” effects that can complicate the situation, when deemed safe by your provider, in some situations it makes sense to try low-cost, low-risk measures with a potential for benefit first, before resorting to bigger guns.
If you hold the worldview that you’d rather try low-impact choices first and that you’d like to be in charge of making your medical decisions, but your doctor doesn’t support this view, it may be time to find a provider who will support you in making the choices YOU determine are best for you. Remember, your doctor works for YOU, not the other way around!
5. Do you know of any specialists or other modalities who/that might be able to help me heal my diagnosis?
Your doctor may have a colleague who is known for their work with similar conditions or diagnoses, or know that certain therapies are helpful, but may not share about them if you don’t ask. Just last week, a woman told me that she had avoided physical therapy for her severe joint pain, because exercise of any kind hurt. When she mentioned this to her doctor, he said, “Oh, have you tried AquaTherapy?” She hadn’t and he wrote a referral on the spot for water physical therapy, which proved helpful. Even if you don’t make use of the services, knowing your options gives you other strategies to try if you don’t get the results you are looking for.
Ultimately, dealing with and healing a long-term, chronic illness is a long game, and requires being an educated patient or client. Make use of these questions to help create a pro-active, informed, and multi-pronged approach to getting the best care you can.
What questions have you found most useful to ask your provider?
When you’re ready to have support from a practitioner who listens deeply to every word you say, and can help you figure out how to talk with your doctor(s) about your health conditions, schedule a free Assessement Session with me, to learn more about how I can support you in your process.
