3 Simple Steps Patients Can Take to Help the Healing

If you are reading this as a newly, partially or perhaps even undiagnosed patient with a chronic illness, I’d speculate you might look at these three steps and see them as anything but simple — perhaps obvious, impractical or impossible. If so, I ask you to bear with me, as I have been on this chronic illness journey for a long time, decades, and if I were allowed a do-over, these three steps are the ones I would set out to accomplish on the front end.

After writing the book You Don’t LOOK Sick! Living Well with Invisible Chronic Illness with Dr. Overman, I’ve had the opportunity to attend patient support conferences and receive readers’ letters from all over the country, even abroad. Learning the stories of hundreds of patients has reinforced for me the validity of taking these recommended steps. I’ve met so many patients struggling with illness to the point of despair, and yet managing their lives in ways that amplified both their symptoms and the emotional challenges of long-term illness. There is so little we can control about feeling sick all, or most, of the time. The simple steps below are within our control.

3 Simple Steps Patients Can Take to Help the Healing

1. Find a Good Doctor, Get a Diagnosis, and Begin Treatment.

This seems so obvious, doesn’t it? Of course this is the first thing to do. But, in fact, it is a tremendous challenge and many patients give up, or go off course, before they can accomplish this vital first step. Patients who have poorly understood, chronic conditions are often marginalized by the health care profession. They are told their symptoms are “all in their head,” or to “just live with it.”  They are asked if perhaps they need to see a therapist, instead of an MD. This process can be degrading and frustrating, and patients sometimes quit looking before they find that caring physician, in the proper specialty and with experience in treating their specific disorder.

I gave a talk recently to a patient support group and made the point that we hire doctors to provide a critical service, the same way we hire accountants, attorneys and other professionals. If the level of service is unacceptable, it is our job to move on. I allow any doctor three strikes before making this decision, but even so, I had to fire a few before I assembled a compassionate, collaborative healthcare team. After the talk, a physician came up to me and remarked, “I’m glad you said that, but you know sometimes it’s not anyone’s fault, the relationship just isn’t a fit because of personality or temperament. There are times I know I am not the right doctor for a patient, but they have to do the firing, I don’t really have that option.”

It took me seven years to get my first diagnosis, but the doctor who named the illness was unsympathetic and ill equipped to treat it. While I was grateful to him for the diagnosis, I kept looking until I found a physician who was interested in my condition and experienced in treating it. She told me early in our work together she could treat only part of what was going on with me, and I needed to continue the search. She believed there was at least one more diagnosis in my future. That was the bad news.

Here’s the good news, I only had to find that first good doctor because it turns out the really good ones have their own little club — they call each other for advice, refer patients to each other, and share information. Find one and you have access to the others. With her help, it didn’t take long at all to find my next good doctor, get a second diagnosis, begin treatment, and at last, see my symptoms begin to stabilize.

If we understood chronic illnesses completely, they wouldn’t be chronic; we’d have figured out how to fix them. As patients, we need to understand that in a real sense, we are part of an experiment unique to our particular set of symptoms, and finding the most effective treatment will take time. We must work with our physicians at the complex task of finding the most effective medications, in the right doses, and align this with lifestyle changes and other supportive therapies. Once we do find greater stability, it is likely our symptoms will improve, or change, or we’ll get sick with something new, and it’s back to the drawing board again. There isn’t a magic bullet.

2. Become the Best Patient You Can Be.

The chronically ill often have to spend so much time struggling to find a good doctor it’s easy to forget the importance of being a good patient. Imagine what a compassionate doctor’s day is like. He or she might meet with one person after another who is confused, despairing or demanding. The doctor is on a tight time schedule, but patients in need may exhibit little respect for this, take more time than is allotted, and leave the doctor stressed and running late all day long. Often tests are inconclusive or fluctuate from day to day and patients become angry at this lack of verification. When doctors ask to hear the patient’s story — the family history and how the illness developed — to help them solve the puzzle, patients may speak more of feelings than facts, making it hard for doctors to get the information they need. My advice to you is, don’t be that patient. Instead, be this patient:

  • Come to appointments prepared, with current medications and supplements updated and written down in advance.
  • Develop a language to clearly describe symptoms, changes in symptoms and side effects of treatment.
  • Prepare a detailed family and personal history and keep accurate records including all treatments, strategies and providers and an annual summary.
  • Arrive for a fifteen-minute appointment with no more than three carefully chosen questions or topics to address, in writing, with a copy for your doctor.
  • Be compliant to instructions, and if not, have a reasonable, valid reason why not.

3. Make Peace with Your Illness — Accept It as Part of Who You Are Now.

We describe our relationship with disease in terms of combat and conflict. Obituaries list the names of people who died “after a long battle” with illness. We talk about how people have “beat” a disease, or are continuing to “fight” it. We do not begin our journey with illness looking to ease symptoms and improve our quality of life. We are looking for a cure — we want the thing to go away. I’ve met many patients who had been ill for years, but still began each day determined to ignore this fact. They were fighting to be the same person and live the same life they had before becoming sick. As a consequence they were not improving, constantly exhausted and felt like a failure at everything.

Two things helped me get past this futile mindset. The first was the bell-shaped curve. I thought about what it would look like if all of humanity were laid out on the curve according to relative health. At the sickest end would be children born into poverty and filth, whose life expectancy was very short. It would include people with degenerative, terminal end-stage illness. At the most healthy end might be people from those mountain villages where everyone lives past 100, or world-class athletes in their prime. At the top of the curve, representing the average might be people who had experienced some surgeries or health emergencies and who probably had a range of illnesses from which they recovered, at least partially. You can choose your own examples.

I asked myself, where do I fall on this curve, with multiple chronic conditions, adequate healthcare, stable symptoms and terrific family support. I had to put myself much closer to the top of the curve, the average, than to the edge of the curve, the desperately sick and dying. What this exercise taught me is that illness is normal; it affects everyone. In the great scheme of things I’m not so bad off, so I’d best get on with life.

The second thing that helped me was grief. Once I began to consider that my illness was not going away, I would not do all the things I had planned for my life and I would never again be the person I once was, it took me to my knees. I cried and cried. For months. I feel like crying again just remembering that time. But after I let the grief come and wash over me, I came out the other side curious about who I was now, and what I could do now.

I began to structure my days to accommodate and honor this illness that was part of me. I reduced social obligations; I began to take daily rest periods and experimented with how many hours I needed to be in bed each day to enjoy the highest function. Same with exercise, how much was too much and exacerbated symptoms, and in what small increments could I add a little more. I learned I needed to be home, alone and quiet, several days of the week.

Once I made peace with being a sick person, the social challenges became so much easier. I could tell people I had an illness without emotion, or not tell them at all if I didn’t want to. I began to discover I had gifts, old and new, that could still be given and developed and built upon. Today, I love my life, and there isn’t much that I would change.

There are really good, practical reasons for making peace with illness, but the best reason is that until you do, you can’t discover the new life you can build for yourself and experience all of its mystery and opportunity. You can’t discover that it is possible to live well, even if you can’t get well.

This article was first published on ProHealth.com on January 28, 2013 and was updated on November 19, 2020.


Joy Selak - Author of You Don't LOOK Sick! Living Well with Invisible Chronic IllnessJoy H. Selak has lived with chronic autoimmune, musculoskeletal, and neurological conditions since the late 1980s. Prior to becoming ill, she earned her Ph.D. in Curriculum in Instruction from Arizona State University, where she taught writing and served regionally as a language arts curriculum specialist. In 1981, she left education to become a financial consultant, rising to the position of Vice President, Investments with Smith Barney in 1987. She taught portfolio management at California Lutheran University and Skagit Valley College, and was a regular speaker to professional colleagues and community groups about building client relationships and investment strategies.

Joy frequently speaks to patient groups and medical professionals nationwide about building a meaningful life that contains illness, and she has been a guest on radio and television programs. She is also a speaker to schools and writers’ conferences about the craft of writing.

Cannabis For Lyme Disease: What You Need to Know

I have been asked many times by my sweetheart over the years to consider cannabis for my pain.  Each time, I vehemently stated that I did not need it; in truth, I was one of the many that had a very negative connotation with “pot.” I was one of the few that had never ever tried or even considered trying it when I was younger, and I hadn’t succumbed to the peer pressure of trying it.

Since my diagnosis of Lyme disease in 2002, I also contracted two other tick-borne infections: Babesia and Bartonella.  My biggest obstacle has been Babesia, which also comes with much chronic pain. I found that many of the medications that I’d used throughout the years either never helped to relieve the pain from this infection, or I was allergic to them.

I had tried everything, from NSAIDS to muscle relaxants and many other conventional medications.  At the same time, I witnessed many others with Lyme who used a daily regimen of morphine, tramadol, or oxycodone and who ended up becoming hooked on these medications. For some, the addiction was so great that they were no longer able to function well in everyday life and so were forever lost in the addiction.  I did not want any part of that, so I silently suffered while I smiled, day in and day out.

It took a very bad Herxheimer reaction and the horrid side effects from Mefloquine a/k/a Lariam for me to reconsider trying cannabis.  I was dealing with major nausea, weakness, insomnia, horrific night terrors/nightmares, hearing things, hallucinations, and wretched headaches, all of which were side effects of the medicine.  The hopeless and dark thoughts were also creeping in again.  I had used this medication before, and it was a big decision to decide to use it again.

It wasn’t until my third round of dosing with Mefloquine that I reconsidered giving cannabis a try.  The two times that I had taken Mefloquine in the past had left me very ill and weak and I had to have help from family and friends with daily duties. I was also unable to work for a full month. This prompted me to look further into cannabis for Lyme warriors like myself.  After all, I had been asked many times before if I had tried it or knew anything about the effects of cannabis upon Lyme disease.

Cannabis and Lyme Disease

I was delightfully surprised and overwhelmed with what I found. I also discovered that cannabis was useful for healing other medical conditions.  Never mind that I didn’t understand what the acronyms and terms such as CBD, THC, THCA, and strains like indica and sativa meant.  Everything that I discovered can’t be described in this article, but I will do my best to simplify it as much as possible.

Here a few things I discovered, which should be noted by everyone who is considering cannabis — whether it be the oil, tincture, edible cannabis products, topical treatments, or when smoking or vaporizing it:

1. All cannabis oils are not created equal.  In fact, many of the ones that I have heard people using only have 0.1% CBD! Oh my!
2. Cannabis is not a cure-all.  As with many therapies for Lyme disease, there is no one single cure for everyone.  We are not all exactly the same.
3. Cannabis and Hemp are not the same. (See table below.)

HempCannabis
• A version of the cannabis plant that has  almost no THC.
• It is usually known as industrial hemp grown specifically to be used for products.
• Its uses are as follows: paper, rope, clothing, and oils
• Average THC  0-0.1% THC or less than 1%
• Very low CBD
 • Usually the flowering parts of the plant.
• Grown far apart to promote flowering
• Average THC 10% range 7-20%
• Higher levels of CBD

4. There’s a difference between CBD and THC. Many Lyme warriors do not want the “high” that comes with THC but just want some relief, which comes from the CBD.

5. There are different cannabis strains. Not all strains will work for everyone. Also, since Lyme disease symptoms vary from hour to hour or day to day, you may have to use a different strain, depending on your symptoms.

6. Different strains do different things. Strains of cannabis, whether it’s indica, sativa or hybrids, are helpful for different conditions such as insomnia, anxiety, chronic pain, etc.  As mentioned each strain helps each individual differently.

Hybrids consist of varying combinations of indica and sativa.  The hybrids usually are stronger based as a sativa or indica. Ruderalis is a wild strain of cannabis that is incredibly short and has fewer leaves that are fewer in number and lower in THCs. Strains have been found to possess a chemical profile similar to Hemp. Sometimes it is used for crossbreeding with indica and sativa to produce ”auto flowering” hybrid to produce flowers or buds on age rather than the light cycles like indicas or sativas.

IndicaSativa
BodyMind or Cerebral
Sedative EffectEnergetic Effect
Higher CBD levelHigher THC level
• Usually causes sleepiness
• Relieves anxiety and stress
• Relieves pain
• Relaxes muscle spasms
• Stimulates appetite
• Reduces intra-ocular pressure
• Acts as an anti-convulsing agent
• Reduces inflammation
• Relieves headaches and migraines
• Usually stimulates appetite
• Enhances creativity and focus
• Relieves headaches and migraines
• Reduces nausea
• Supports Immune system

 

7.  Each person tolerates cannabis differently.  Some people may require more while others will require less to get relief.  I suggest that you begin slowly to see how you react to that particular strain.

8. We all have an endocannabinoid system (ECS).  All mammals have their neural receptors specifically designed to be activated by cannabis.

As I stated earlier, cannabis is not a cure for Lyme disease. For some, it has improved their quality of life and for others, it has been a godsend. Yes, there are some success stories; Shelley White, author of Cannabis for Lyme Disease and Related Conditions is one of these.  Her “Lyme disease was so debilitating that she had endured at least 10 seizures daily for a year and a half. She began smoking marijuana from a pipe and then switched to inhaling it through a vaporizer. Just by doing that, her seizures stopped. Then she decided to go to the next level by using cannabis oil.”

Someone once explained to me that cannabis is, in a nutshell, “an anti-inflammatory that helps stop pain receptors in the brain from firing. It is all natural, non-addictive and is much easier on the body (than medications).  You can also get a product that has very low THC (the ingredient that gets you high) and which is instead high in CBD’s (the ingredient that helps eliminate the pain).”

As always, my word of caution is to work with your doctor and use your resources to weigh the risks and the benefits before you try anything.  I know I will. You have to do what is best for you!

This article was first published on ProHealth.com on April 2, 2016 and was updated on November 3, 2020.


Lydia Niederwerfer is a Lyme disease survivor, a freelance blogger, founder of Lyme-Aware.org, and is passionate about spreading awareness of Lyme disease and other tick-borne illnesses.  She is a devoted wife, loving sister, and inspires many of her friends and fellow Lyme Warriors. She also shares the trials and triumphs she has experienced in her journey with Lyme disease on her blog at Lyme-Aware.org. Lydia has a B.A. in Business Administration, majoring in finance and works within her area school district.

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