My husband and I just finished watching Afflicted on Netflix, a documentary series on mystery chronic illnesses. He's a physician and I'm a counselor and we both finished watching with feelings of deep sadness, outrage, helplessness, and discomfort. I hope to explain all of my feelings in what I write below but may struggle to do so in the limited format of a blog. The largest sources of my discomfort and what I'll focus on here was how the subjects, their friends/family, and practitioners seemed to hyper-focus on making a false distinction between whether symptoms were "in their head" or "real," and how licensed healthcare practitioners capitalized on the subjects' need to feel validated that symptoms were "real." Nearly every person featured had been financially ruined by the pursuit of treatment for their symptoms and none, as far as could be seen from the documentary, had an integrated team of professionals collaborating on conceptualization and treatment.
The stories featured in Afflicted reminded me so much of clients I have worked with and of some close friends and family members who have struggled for years with similar conditions. I wanted to reach into the screen and help the people featured - not necessarily as a professional, but just as a human with some lived experience. I also wanted to say "Please let the mental health team help too! It doesn't mean you're crazy or that you're not sick. I just want you to have good support as you go through this and our friends and family members always have their own agendas with our health, no matter how well-intentioned."
More specifically, here is what I wish everyone with chronic, mystery illnesses understood, particularly about how mental health professionals can help:
- Yes, every symptom you experience is "real" because you are experiencing it. You are suffering and those of us in mental health see that. Our support is not contingent on whether the ultimate cause(s) of your symptoms is infectious, autoimmune, environmental, psychological, neurological, or other.
- Accepting help, medication or therapy, from mental health professionals does not make your illness any less real or any less physical in nature. Refusing help from an entire discipline of healthcare because you think accepting it means you're "crazy" may be slowing your recovery and/or increasing your suffering.
- You do NOT have to stop pursuing medical diagnosis and treatment of your condition in order to accept support from people in mental health disciplines.
- You can indeed have BOTH Illness Anxiety Disorder (described below) AND 100% valid, diagnosable medical conditions that need treatment. Those of of who specialize in treating people with chronic illnesses do not subscribe to a false dichotomy of "it's either in your head or in your body."
- There is probably no magic pill for what ails you. Anyone who promises one should be looked at with great skepticism. Mystery illnesses are mysteries for a reason and it is probably going to take a team-approach from multiple disciplines working together, to find a cohesive conceptualization of your case and an organized treatment plan.
- Your practitioner(s) needs to be watching your wallet (and not in a vulture-like way). One of our ethical principles is non-maleficence and that means not doing things to harm your financial future in the pursuit of a cure. Yes, some treatments will be expensive, but ethical practitioners will work with you to minimize your out-of-pocket costs and try to convince your insurance company to cover non-standard treatments.
What to expect from your mental health team
Diagnosis: Illness Anxiety Disorder vs. Adjustment Disorder
Most clients who present to a mental health practitioner wanting support for a chronic mystery illness will be diagnosed initially with Adjustment Disorder (often with depressive or anxious symptoms) Adjustment Disorder means you're having an intense psychological reaction to an identifiable stressor (like having a chronic illness that isn't getting resolved). Yes, that means that most of us will start with the assumption that you're stressed out because you're sick. If you have a previous mental health diagnosis, (for example, Generalized Anxiety Disorder (GAD)), it may be more appropriate to call your current distress an exacerbation of GAD previously in remission (exacerbated by being sick). Very few of us will make an Illness Anxiety Disorder diagnosis for the first several sessions, unless you have a history of it.
We then get to a critical point in assessment and treatment where we risk making you, our client, feel very invalidated if we don't explain what I'm about to explain, very carefully. Here's my less careful written explanation: There is a chance that I could meet with you, take a thorough history, observe your relationship with your chronic mystery illness over several sessions, read through your medical records, consult your other medical team members, and realize that you are experiencing a very particular psychological relationship with your illness that qualifies you for an Illness Anxiety Disorder (IAD) diagnosis. This is where some folks with chronic mystery illnesses feel invalidated and get angry because IAD used to be called hypochondriasis and no one wants to be called a hypochondriac.
At its core, having IAD means that you are generally worried about your health and that you tend to spend a significant amount of time, energy, and resources attending to diagnosis and treatment of symptoms, so much so that you're not really living the life you want to live. Having IAD does not mean that you are not physically ill! You can be very ill or completely well and have IAD.
In addition to being worried about health and missing out on valued parts of life to attend to health concerns, folks with IAD often report the following experiences:
- First, they're sensitive to bodily sensations - tingling, digestive activity, their own heartbeat, etc. They actually seem to be able to feel things and pay attention to them better than most of the population. "Well" folks with IAD tend to perceive normal sensations as alarming and "sick" folks with IAD experience more disruption from the sensations associated with their illness.
- Sensations often provoke catastrophic thoughts about possible causes of those sensations and intense feelings of fear.
- In response to those thoughts and feelings, sufferers of IAD seek reassurance from others about their symptoms. This could be online research, and discussions with friends and family, and doctors. Often reassurance results in temporary relief of symptoms, only to have them return. Often when they return, the person with IAD feels defeated, disappointed, and depressed, being "back to square one."
- This sensation - fear - thoughts - reassurance cycle usually starts small and gradually takes up more time, energy, and resources as it goes, eventually taking over the sufferer's life and squeezing out all other valued activities they once engaged in. Being sick becomes a 24/7/365 job.
- Feeling stuck "being sick" 24/7/365 is the real problem. Sufferers of IAD have stopped living life and this is ultimately the clinical problem we want to address.
Again, I want to emphasize that having IAD does not mean you're not sick. It just means that being sick has become too large a part of your life. Treatment is about taking back as much time, energy, and resources for the things that matter to you, as your health will allow.
Treatment: Taking back your life
My goal when supporting anyone through a health crisis, chronic or acute, is to keep them engaged to the maximum extent possible, in valued activities. This is the same goal I have for clients with cancer, Crohn's, fibromyalgia, chronic fatigue, or chemical sensitivity. That means we need to gradually increase your engagement in the things you actually want to spend your life doing and decrease the amount of time, effort, and money you spend on your sickness.
Budgeting resources for chronic disease management
Setting a reasonable resources budget for mystery illnesses is challenging. Better-understood illnesses are more predictable in terms of defining a reasonable amount of time, effort, and money for a patient to spend on diagnosis, consultation, and treatment. Most chronic mystery illnesses involve so much uncertainty that a definite time/money/effort budget is hard to prescribe. There is always the illusion that "if only I did MORE to care for this illness, I'd get better and everything would go back to normal." Unfortuantely this is rarely the case so budgeting for a long road and allowing time for engagement in other valued activities is important for optimal treatment.
Physician approval of "budget"
If you come to my office for support around your chronic mystery illness, I first want to make sure that at minimum, you're under the care of a primary care physician with whom you've discussed these symptoms and completed appropriate high-level workups (at least ruling out the really obvious stuff that can kill you). A primary care physician, usually an M.D. or D.O., board-certified in internal medicine or family medicine, is a key part of our support team in ensuring a coordinated effort at addressing your suffering. They are also the person I will turn to when I have a question about whether a time/effort/financial budget we want to set is safe for you.
Gathering a baseline and setting goals for reengagement
We then figure out how much time, effort, and money you're currently spending on diagnosis and treatment of the chronic mystery illness and talk about what you are missing out in terms of valued activities. Once we understand where you're at, we outline a vision of where you want to be in terms of greater engagement in life. What have you been missing out on to take care of yourself?
Once we've established your baseline engagement in chronic disease management activities, a vision/goal of eventual engagement in more valued activities, and received your primary care doctor's buy-in on safety and pace of the plan, we can start taking tiny pieces of your life back, one at a time. Example medium-term goals could be stated like the following:
- Reduce spending on supplements from $1,500 per month to $100 per month so that I can save $1,400 per month towards a downpayment on a house.
- Taper time spent engaging on chronic disease boards from three hours per day to thirty minutes so that I can have one hour for sewing and 90 minutes for exercising with a friend.
- Trim my practitioner team from 10 health professionals to three so that I am managing less conflicting advice and fewer care activities each week and can return to work part time.
Notice that each goal includes both something to do and a reason WHY you might be willing to do it. You aren't trimming your supplement budget just to do it. You're doing it so you can make a downpayment on a house. It can feel dangerous to scale back on activities and expenditures that help us feel safe, but so long as we have good medical approval for scaling back certain parts of treatment, we can reinvest those resources into something that may improve your wellbeing in a different way.
Why do I count on traditional primary care physicians to be the "safety monitors" of my treatment plans to help clients get their lives back? Some practitioners who serve people with chronic mystery illnesses are financial predators practicing junk medicine in exchange for huge sums of money. I count on PCPs to be my scientific reality checkers to help me and my patient understand which therapies are probably helpful/potentially helpful/likely unhelpful/harmful.
I want to be clear that I am completely pro-alternative medicine. I personally have found acupuncture and traditional Chinese medical nutrition to be the key to reducing the frequency and intensity of my migraine headaches. I refer clients to specialists, acupuncturists, naturopathic doctors, and other health practitioners all the time. But I count on M.D.s and D.O.s to check the basic science of the diagnostics and treatments at hand for all of us. I also make sure those physicians have good reputations with their colleagues locally. I try to be very careful to exclude predatory practitioners from care teams, first to protect my clients' financial wellbeing but also because they often use scare tactics with patients to get them to invest more time and money into their practices. Predatory practitioners are dangerous both financially and to the psychological wellbeing of clients with chronic mystery illnesses.
Clues that a practitioner might be predatory
- Treatments aren't covered by insurance and can't be coded for reimbursement. This is a warning sign to pay attention to but it doesn't automatically mean the practitioner is predatory! Some emerging treatments do not yet have enough evidence to warrant widespread use or to make it on an insurance company's "covered services" list but they end up being totally legitimate. For example, there is growing evidence that sub-anesthetic doses of ketamine may be helpful for treatment resistant unipolar and bipolar depression. Yet, while many insurance companies don't cover it yet, you can find evidence that insurers are considering the evidence at hand and may cover it in the future. A non-predatory practitioner will explain this ahead of your first appointment and give you the opportunity and resources to help you advocate with your insurance company for coverage. They'll also often have programs for people with financial need to prevent the treatment from ruining you financially.
- There are no peer-reviewed studies demonstrating the treatment's effectiveness. If a practitioner is relying on "in my experience," as opposed to studies that have been published in peer-reviewed journals to substantiate their treatments, they may be predators. A non-predatory practitioner will be very upfront about a novel combination of treatments being completely experimental and will discuss the benefits and risks of trying the new treatment, openly. If they don't present risks, that's another red flag.
- They aren't treating the cost of the treatment as a potential risk to your wellbeing. A high quality practitioner whose services will not be covered by your insurance should discuss with you an estimated total cost of treatment, what that expense means to your budget, and how to reduce its impact. They should also be open to discussing alternative treatment plans that may be less expensive.
- The treatment is characterized as a magical unicorn without a reasonable failure rate. Even strong evidence-based treatments for known afflictions can fail. Non-predatory practitioners will set reasonable expectations for the treatment and most treatments shouldn't be promised to be anywhere near 100% effective, especially for chronic mystery illnesses. A realistic "high" cure rate could be 60-80% for complicated cases of anything. Even prolonged exposure therapy for acute PTSD (gold standard treatment for wartime trauma) is somewhere around 90% effective. If a practitioner is making unrealistic promises in exchange for payment, that's a strong sign of predatory practices.
- Their approach is non-systematic. Any practitioner who suggests changing multiple variables at once when addressing a chronic mystery illness should viewed skeptically. This isn't to say that if several well understood issues emerge in an initial examination, that they can't be treated simultaneously (I think a Dr. might be able to begin treating high blood pressure, thyroid problems, high cholesterol, and diabetes all at once if they were all diagnosed on the same day. I don't know for sure, but this wouldn't raise my personal alarm.). I become concerned when a patient walks out of a practitioner's office with 20 different supplements, all purchased from the practitioner's office (profit to the practitioner), with no particular plan of how to monitor how each intervention influences the patient's overall condition. Most of the alternative practitioners I collaborate with will change only a few variables each visit, using the scientific method (observe/examine, identify a question, form a hypothesis, conduct an experiment, collect and analyze data, draw a conclusion, and repeat) and peer-reviewed evidence to identify next steps.
Again, avoiding predatory practitioners isn't just about protecting you from financial demise and ineffective treatments but also the scare tactics they use to raise your anxiety in the pursuit of getting you to open your wallet. Please consider carefully who you allow on your care team if you have a chronic mystery illness!
Please don't shut us out... please don't close the door