10 Things I've learned about Chronic Illness
Chronic disease affects approximately 133 million Americans, which is 40% of the total population..
According to the National Institutes of Health, up to 23.5 million Americans suffer from an autoimmune disease—and the prevalence is rising.
According to the American Autoimmune Related Diseases Association (AARDA), the average time for diagnosis is 4.5 years and during that period the patient typically has seen four doctors.
About 20 percent of American adults — 50.2 million people — live with chronic pain.
Chronic illness is THE health crisis of our generation. Heart disease, diabetes, autoimmune disease, chronic viral infections, chronic pain, Covid long haul syndrome and more affect 40% of the population and that number is rising. I treat many patients dealing with some sort of chronic pain and/or illness. Most come to me after years of struggling, and after standard medicine has failed to help. Some feel awful all the time but have not gotten a diagnosis. Many have been in pain for years with no relief. Some have lost hope which is heartbreaking but understandable – dealing with chronic illness is a full time job, and can be debilitating, frustrating, frightening, expensive, isolating, and depressing.
One of my acupuncture teachers used to say that western medicine is the best at treating acute conditions, and the worst at treating chronic ones, and for many reasons, I agree. The over-specialization of medicine, the primary care shortage, and the lack of time in the treatment room can make it difficult to put all of the chronic illness puzzle pieces together. But other practitioners, like acupuncturists and functional medicine doctors can be helpful. I have had my own experience with late stage lyme disease, so I have experienced first hand how difficult it is to get a diagnosis, and how difficult it is to get help. Here are some things I’ve learned from treating patients, and being a patient.
Your tests may all come back normal
There is the possibility that you can feel so awful it feels like you are dying, but all the major medical tests come back normal. That ends up being good news and bad news. Good news that you are not in fact suffering a heart attack or stroke or kidney failure, but bad news that your symptoms don’t have a simple explanation. This does not mean that there is nothing wrong. Trust how you feel.
2. You are not crazy
If your tests do come back normal, and your doctor can’t find a reason to explain your symptoms, you may start to feel (or be treated like) this is “all in your head.” But I am here to tell you that you are not crazy, it is not in your head, and any medical professional who treats you that way is not the one for you. Yes, it is important to advocate for yourself in any medical situation, but it borders on abusive to have someone not believe you, to infer that your debilitating physical symptoms are somehow psychosomatic, simply because they cannot solve the puzzle of what is actually going on. Trust yourself. If you feel awful there is a reason. You are not crazy. Find a doctor that believes you, and has the time and energy to help you solve the puzzle.
3. It’s usually more than one thing
I find that with chronic illness, it is generally a combination of factors that tip the scales and push the body into a crisis situation. It could be a genetic predisposition, combined with a lingering virus, a period of extreme stress, poor sleep, diet, environmental toxins, immune deficiency, even exposure to extreme weather like a sunburn or freezing temperatures. It inevitably ends up being a “straw that broke the camel’s back” situation. One of these things is not enough to make you ill, but a combination of them, over time might be.
4. There may not be a quick fix
You have to change your lifestyle. You cannot cure a disease while enmeshed in the same circumstances that created it. You will most likely need to change the way you eat, how much you sleep, how many hours you work, or how you workout. You may need to switch your personal care and cleaning products. You may need to supplement with vitamins, minerals, and herbs. You may need to commit to acupuncture, massage, physical therapy, or functional medicine. And it will most likely take time. It won’t be an instant fix – more likely small steps towards feeling better over a long period of time. But just be prepared for that ahead of time, and manage expectations. You will need patience, and persistence. All of this can seem daunting, but I think it is empowering. You do have some control over your healing process. Making necessary changes will support and speed your recovery.
5. Diet matters
More and more science is backing up what we already suspected – your immune system starts in the gut. I would even suggest that when you are ill, almost nothing is more important than what you are putting in your body. In Chinese medicine, we generally advocate for staying away from the “big three” – gluten, dairy, and sugar. They are inflammatory, and create “phlegm”, which causes many systemic problems. In general it’s a safe bet to try eliminating them first. In addition, I would recommend eating organic, and eating real food – i.e. nothing that comes out of a box, bag, can, or the freezer section. But working with a practitioner (acupuncturist, functional medicine doctor, nutrition counselor) is best – to come up with an individualized plan, exploring vitamin and mineral deficiencies, trigger foods, anti-inflammatory protocols and more.
6. Exercise can help or hurt
Moderate exercise can help, but for many, especially those dealing with autoimmune conditions, Lyme, EPV (Epstein Barr Virus), ME/CFS (Chronic Fatigue Syndrome), or even long term Covid, an intense workout can trigger symptoms and make you feel worse. Over exercising can make inflammation worse and trigger a flare up. And any activity that puts you into “fight or flight” mode, is going to raise cortisol and lower your immune system. It may take some time to sort out your “sweet spot” but I find walking and low impact yoga to be beneficial with little risk of negative impact. Start with 20-30 minutes of either and see how you feel.
7. Explore acupuncture and herbs
Chinese medicine is by nature more wholistic – we look at the whole person, not just individual symptoms. We take into consideration history, symptoms, pain patterns, mental and emotional state, diet, sleep, work habits, and more. There is no such thing as too much information. Most appointments are an hour or more, so we have the time to listen and ask questions. One of my teachers called it being a “relentless detective” and that is what it feels like. We are trained to identify and treat patterns, many of which do not have a western equivalent. We treat all of your symptoms, so you don’t have to bounce from doctor to doctor. And we see you regularly, so we can monitor and adjust treatment as needed.
8. Functional medicine
I am a huge fan of functional medicine for any complex ongoing illness. They are medical doctors (or nurse practitioners) but they incorporate alternative modalities. They test for things your GP is not necessarily looking at like viruses, parasites, heavy metals, food allergies, vitamins and mineral deficiencies, histamine levels, hormone levels, and more. And they often offer creative treatment strategies. Whenever I have a problem I can’t solve on my own in the treatment room, or with my own health, I consult my functional medical doctor.
9. Stress makes it worse
Stress makes any physical ailment worse, but I believe it is of particular importance for anyone dealing with chronic illness. Prolonged periods of stress can suppress the immune system, leaving you vulnerable to viruses, bacteria, and parasites. It can lead to adrenal fatigue, or HPA (Hypothalamus, Pituitary, Adrenal) axis dysregulation, which can cause neurological or cardiac symptoms. It elevates histamine levels and exacerbates systemic inflammation. It even makes pain worse. Any treatment of chronic illness has to include some sort of stress management plan – yoga, meditation, acupuncture, massage, taking a walk, being in nature, napping, reading a book – really whatever works for you. But it is an important part of treatment.
10. Celebrate small accomplishments
Don’t lose hope. I know first hand how frustrating it can be when you feel unwell for months, or even years! Try not to compare where you are today to where you were before you got sick. Compare where you are today to where you were yesterday or last week, or last month, and celebrate those small victories. Maybe this week you can do 30 minutes of yoga when last week you could only do 20. Maybe this month you are getting a solid 8 hours of sleep when last month you were struggling with insomnia. Maybe today you had dinner with a friend when not too long ago that was unthinkable. You can and will feel better, one small step at a time.