Autoimmune and other disorders that may present with vague or a diffuse cluster of symptoms, or are difficult to diagnose, seem to be at an all-time high. The American Autoimmune Related Diseases Association estimates that approximately 50 million Americans live with an Autoimmune disorder. On the other hand, the National Institutes of Health, also a reliable source of information, claims that only 23.5 million Americans suffer from an autoimmune disorder. The NIH recognizes less than half of what is reported by the AARDA. Why the discrepancy? NIH funded studies include only 24 diseases/disorders, while recent studies by the AARDA now include upwards of 80 to 100 diseases/disorders. Research is ever-evolving and it is hard to keep up!
You can see why chronic illness may be a confusing subject for so many people when two reputable organizations who lead our understanding of what diseases exist, supply different numbers based on what they consider to be different facts. Currently, conventional Western medicine does not seem to know how to detect or diagnose many of these diseases accurately.
You may have personally been to doctor after doctor, hoping to figure out what is wrong and receive a treatment recommendation. When you are not able to be properly diagnosed or treated, it becomes an invalidating experience. You know that your body is physically off, but a doctor looks at your blood tests only to tell you, “Everything looks fine,” or is puzzled by inconclusive or confusing results. Perhaps your health care professional is able to make a diagnosis but then unsure what treatment to provide. Maybe the doctor recommends a medication to hopefully relieve some symptoms, but this often means coping with side-effects, and you both know this is not solving the problem.
When you do not understand why the problem is happening in the first place, the entire process of trying to get back to your normal, healthy functioning is frustrating. People have a range of experiences with attempting to receive a diagnosis, including being told they are exaggerating their symptoms, given a proverbial pat on the head and told to deal with it, being prescribed medications whose side effects make it difficult to impossible to function, or well-meaning doctors shrugging and looking puzzled because they do not know how to help.
Adding this lack of understanding to the stress and exhaustion of having an undiagnosed and/or chronic disease can feel invalidating. This adds additional stress and worry, maybe even worsening how sick you are feeling.
Well-intentioned family and loved ones may also contribute to this feeling of being misunderstood. Have you ever had a cold or flu, or some minor ailment and posted about it on social media? If so, you have probably gotten treatment recommendations from people with whom you didn’t even know you were friends. “Soak your feet in honey,” “Use essential oils – they cure cancer,” “Stop eating red cabbage,” and other off-beat suggestions are almost guaranteed. Often, someone will swear that their best friend’s aunt’s ex-next-door-neighbor, or someone equally as elusive, swears by the cure they are presenting to you.
People typically don’t mean any harm. They want to be helpful and for there to be an easy cure for what ails you. Even so, this can leave you feeling worse than before you reached out for solidarity. What happens is that this advice-giving oversimplifies the chronic problems you are faced with and can make you feel unseen and misunderstood. The suggestions imply that if you just took this one simple action, you would be fine once again.
These feelings of frustration, loneliness, and misunderstanding can also happen in conversations with loved ones. People in your life may not understand your particular limitations or be sensitive to them. Often, when people are in pain, for example, their cognitive abilities and emotional control centers are compromised. Try solving a complicated math problem in the midst of a splitting headache. Even if you can accomplish this task, it is much harder to do than when you feel well and takes putting forth a lot more energy, leaving you feeling depleted afterward.
People in pain or coping with other chronic symptoms may not know or be able to communicate all the ways they are affected. It can take a while to learn that you have brain fog, that your memory is not what it used to be, or that regular physical activities now cause pain and you are unable to finish. Loved ones may be frustrated that you are not trying hard enough when in reality, you can’t think as fast or recall facts you used to be able to, and you also cannot communicate that this problem exists.
If you are struggling with invalidation as the result of the diagnosis or treatment of a chronic illness, or loved ones’ reactions to your experiences, read on for coping strategies.
A first and essential step to coping with the unpredictability, chronicity, and difficulty with diagnosis and treatment, is validation! Everyone needs to be validated on a regular basis. Validation does not mean that you need to be complimented or pacified; rather, validation means feeling like you matter and knowing that you make sense. This is a basic human need.
If you are living with chronic illness, you may feel invalidated by the medical community, family, friends, or even yourself. When doctors throw up their hands and don’t know how to help sufficiently, or friends and family have trouble understanding what you are feeling and need, it is easy to feel demoralized and start questioning yourself: Am I exaggerating this? Is it really that bad? Is there something wrong with me that I can’t cope as well as others?
You may have read in my previous installments, or even personally experienced, how the unpredictability and chronicity of a disease increases the difficulty of being able to cope. When you add chronic invalidation, go through each day feeling misunderstood, and then even perhaps blame yourself, this adds to the stress your body is feeling, making you feel worse, emotionally and physically.
If you see yourself in this description, it may be time to learn and practice the art of self-validation. Self-validation means learning the skill of saying to yourself, “I make sense. What I am experiencing matters, and I make sense.” This can be difficult when you are not sure what you are feeling, what the reason is you’re feeling this way, or know why you are experiencing what you are. Here is a short practice you can use to help yourself learn self-validation:
Notice what you are feeling in this moment and see if you can label it. Describe what you are feeling in words. Are you noticing physical sensations such as pain, temperature (cold or hot), movement, or comfort? Are you noticing any emotional sensations like tightness in your chest, a relaxed belly, or butterflies in your gut? The point is to take a moment to notice what you are feeling in your body in this moment, without judging it as right or wrong, good or bad. Just notice and describe it as best you can to yourself.
Now, whatever you are feeling, say to yourself, “It makes sense that I am feeling _________.” If you know the reason it makes sense (such as it makes sense that you are tired because you didn’t sleep well last night, or maybe have not for many nights), then tell yourself that. If you do not know why you are feeling how you are feeling, you can still say to yourself, “I make sense. Even if I do not understand why I am feeling this way right now, human experiences, emotions, physical sensations, and behaviors all make sense whether I understand them in the moment or not.”
When engaging in this practice, you are grounding yourself in the fact that your experience is real, and it all makes sense whether you know where it comes from or not. See how you feel after practicing this daily for a week. Most people start to notice some relief or burden removed. The illness and symptoms may remain but removing the weight of questioning yourself and your validity leaves you better equipped to cope with your illness. Learning self-validation is one of the most important pieces when it comes to coping with a chronic illness.