Rheumatoid arthritis, fibromyalgia, diabetes, celiac disease, Sjögren’s disease, endometriosis, and lupus. All chronic, life-altering conditions that fall into another sub-category (along with many others) known as “invisible chronic illnesses.” Invisible chronic illnesses are generally categorized as ongoing conditions with debilitating symptoms that cannot be easily recognized by someone's outward appearance. These conditions can make it difficult for a person to live a full and productive life, however the “world” may perceive a person as being able-bodied and healthy. This is when the all too familiar quip “You don’t look sick” comes into play in the lives of people living with ICIs (invisible chronic illnesses). Sadly, a person living with an ICI is guaranteed to hear that saying repeatedly, like some strange adaptation of the movie “Groundhog Day” but without the funny banter and happy ending.
I can count at least four times in the last week that I have been told, “I don’t look sick” which, I must admit, even after 32 years of living with systemic lupus, still unsettles me. I’m baffled that after 32 years I haven’t manicured the perfect response. I stumble to know what to say at the moment. Do I say, “Thank you?” or “That’s rude.” Should I throw back a polite, “How nice?” Or should I say what I really want to say: "Your unconscious incompetence has rendered you unqualified to presume such a statement. Please stop talking about something you know absolutely nothing about and leave me in peace.” I mean, the possibilities of retorts are endless! Depending on the day, I can vacillate between feeling validated and feeling persecuted, wanting to “school” a person and showing them grace. Do I spend what little energy I have to patiently teach or get on my patient high horse and PREACH!?
Living With Invisible Chronic Illnesses
Sadly, this is such a common predicament in the lives of those living with ICIs. In the book, “Sick and Tired of Feeling Sick and Tired,” they address that this dilemma is at the heart of
the distress of millions of people who live with ICIs, diseases that are “characterized by chronicity and symptoms that are not externally manifested.” Some ICI symptoms include chronic fatigue, chronic pain, memory loss, muscle weakness, vision disturbances, numbness and tingling of the extremities, intestinal distress, cognitive impairment, blood sugar fluctuations, and skin irritation. Unlike a broken bone or a visibly wrapped or cast wound, these symptoms are identifiably vague and visually dismissed. There can be no external evidence of suffering; therefore, no elicitation of compassion from others.
Consequently, if not experiencing these debilitating symptoms wasn’t enough, the person living with the ICI must endure the negative reaction of others. Patients can feel invalidated, confused, full of self-doubt, and lonely.
They are shut down and hurt by their family and friends, and sometimes even by their doctors.
The Doctor Dilemma
Many ICIs present a diagnostic and treatment dilemma because symptoms are not only non-observable but sometimes even immeasurable. Take a disease as complex as lupus; for example, lupus can take six years to diagnose. This can be an arduous and frustrating process for both the patient and the doctor. The doctor often has to rely on a patient's subjective experience due to cognitive brain fog, which can be frustrating for them. Less determined doctors may even grow weary of digging deeper into unraveling the mystery of the symptoms and project their frustrations by “gaslighting.” Many patients in the More Than Lupus community have been called “difficult” for asking for more lab work or “attention seeking” if they want a second opinion. Some have even been called a hypochondriac for asking too many questions.
Another notion is that doctors tend to look for the most straightforward, quickest, and most logical explanations for their patients. In the medical community, the aphorism is historically known as the “horse/zebra theory.” This diagnostic hypothesis follows the logic that if there is a predetermined measure to think something is the obvious choice, then best to choose the path of least resistance. For instance, if an animal has hooves, four legs, and nays - then it's most likely a horse. If you lived on a farm and heard a trotting noise coming down the path, you wouldn’t assume it was a zebra, right? The same idea is applied to a patient’s diagnosis. Doctors look for horses, not zebras, in their exam rooms. Sadly, with lupus
and many ICIs being as complicated as they are, they can often prance like a horse and sometimes LOOK like a horse, but they are definitely NOT horses. Though many ICIs are not rare diseases, they can be misleading and mimic other more common conditions. Additionally, the lack of outside physical manifestations or visual cues can cause further disruption of obtaining an accurate diagnosis.
Diagnosing and treating a patient with an invisible chronic illness takes patience and a deeper investigative approach. Unfortunately, not all doctors are up for the task. Some become "fed up" with running tests and peeling back the layers of a patient's symptoms to get to the core of the diagnosis. In certain instances, they may project those feelings onto the patient through egotistical comments, blaming the patient for the symptoms, or dismissing them altogether.
Unfortunately, biases, stigmas, and racial disparities in our medical institutions are other catalysts in ICI medical gaslighting. Doctors may “curb qualify” an ICI patient based on their race, ethnicity, gender identity, weight, etc., without doing their due diligence, research, and actually listening to the patient's concerns.
Another problem is that a typical office visit today is around 15 minutes. "Hi and goodbye and here is your lab slip" may be a slight exaggeration, but not far off from how some patients feel while being politely escorted out to the lobby. Physicians more than ever are in a colossal time crunch to rush through appointments to meet their daily patient quotas.
Often, because of this, patients leave their doctor’s appointment with so many unanswered questions.
Here are some tips for improving doctor visits with an ICI:
Write Your Questions in Advance and Practice Asking Them: It is crucial to write down all questions beforehand. It is even helpful to rehearse the questions. Doctors appreciate concise checklists, and being prepared will help weed out non-essential queries or freezing up when the doctor walks in the door.
Use Your Voice! Doctors are doctors, not mind-readers. Being persistent in explaining symptoms, preferences when it comes to treatment, and other important issues is important. A 1999 study found that doctors would only let a patient speak for 24 seconds before redirecting them. So the moral of the story is, speak up, be strong, and be straightforward.
Remember to Have Courage: Courage is not the absence of fear. We know how scary this all can be. Courage is what you do even WHEN you are afraid. You CAN ask questions. You CAN disagree with your doctor. If you are in pain and you know your pain is different from before, make sure to clearly state you feel something is wrong. Lupus and some of its overlapping diseases can be incredibly challenging to treat and diagnose. If your doctor is struggling to define your symptoms as lupus or another ICI, but you feel that is what is going on...you are not alone.
Bring an Advocate with You: It is easy to forget or become intimidated in a doctor's appointment. Additionally, In the stress of a medical event, it’s very common for patients, particularly patients in pain, to be flustered and anxious, which can make them forget to ask important questions or give important information. Bringing a friend, family member, or support person with you to your appointment will help ensure all your concerns are covered. Talk through the appointment beforehand with your support person, laying out expectations and boundaries.
How To Explain Your ICI to Those Close to You
Unfortunately, we live in a society that honors certainty over any other thing. This can apply to your doctors, not seeing clear “evidence” that your condition is real and affecting your life, and it can also apply to your friends and family. I mentioned earlier the “you don’t look sick” comment and how painfully invalidating that can be. That is just one example of the disconnect people living with ICIs feel when trying to explain and often defend their illness and how it impacts their daily lives.
Harper Lee said in To Kill A Mockingbird, “You never really understand another person until you consider things from his point of view – until you climb inside of his skin and walk around in it.” It is challenging to cultivate a relationship with someone when they deny that parts of you exist.
How can you grow, even better yet, heal if there is no acceptance of the truth of your illness?
Your partner, caregiver, best friend, or co-worker may be stuck in avoidance, fear, or even anger. However, if it is a relationship that you value and want to continue to invest in, it is up to you to be completely forthcoming about your illness, how it impacts you, and that it is here to stay. It’s not your whole life, but it is woven into the tapestry of your life. To be loved is to be fully seen, all the many different parts.
It may be challenging to explain to your loved ones what living with an ICI looks like and feels like, so here are some suggestions:
Honesty Zone: Always attempt to be honest and transparent in all your interactions with your inner circle . Self-knowledge and mindfulness will help you develop more trust in your thoughts and feelings.
Offense, Not Defense: Defensive responses only make matters worse. However, being non-defensive doesn’t mean you are a pushover. It means that you have a realistic view of yourself and your situation and are open to hearing feedback, but (and here’s the big but), you can set boundaries about sensitive, “taboo,” and even hurtful topics. Through a non-defensive lens, you may discover that you are overly sensitive to certain comments yet are more open to discussing them with others. For instance, when your husband says, “You need to find a hobby,” that may cause you to be VERY defensive, whereas when a friend says, “Wanna try Pilates with me?" you are more open to the idea.
Everyone Is Different: Accept and even appreciate the differences between you and your friends and family rather than allowing these differences to cause animosity and distrust. Each person in your life, whether your partner or brother or sister, is unique (as are you), and a mature love involves an appreciation and respect for his or her uniqueness.
Avoid Mixed Messages: Become more aware of any discrepancies between your words and actions. This type of self-awareness allows loved ones to nurture trust and dependability. When you are straightforward in asking for what you need and feel, you open yourself up to vulnerability, allowing the real you to love more deeply and be loved more deeply. On the other hand, if you are wishy-washy about what you want and how you feel, people can misinterpret your intent and make snap judgments leading to deep hurt and resentment.
Lastly, the Spoon Theory developed by Christine Miserandino is a way of talking about the impact of ICIs so that others can better understand. It asks people to imagine having to give a spoon for everything they do on any given day, like, going to work, playing with the kids, having a meeting, taking a shower, making dinner, running carpool, and going to class.
In this theory, most healthy individuals have more spoons than they need to get through any given day. But people with invisible illnesses have a minimal number of spoons, and they must be careful how they use them because once they’re gone, they’re gone. There is no going back to the store and getting more.
That is the reality of living with an ICI. There are only so many spoons to spare, and some days there are even fewer than others. This is a great visual tool to explain what a day feels like to your family and friends.
At the end of the day, if you have spoken your truth, you have done all you can do. To quote therapist and friend to MTL, Teresa Jansen, “Ultimately, none of us can "manage'' other peoples' needs or expectations. Managing life with chronic illness or mental health challenges means constantly attending to your "spoons" (a metaphor for the finite energy we each have for any given day, despite what others may expect or demand of you). We can do our best to respond to other people's thoughts, feelings, beliefs, needs, or behaviors, but we can't "own" them. Trying to "manage '' anything outside of our own "lane" means operating with a lot of limited assumptions. Especially while managing a finite number of spoons, trying to "manage other people's expectations'' may be a quick recipe for disaster.”
We hope this blog was validating and illuminating if you are living with ICI like lupus or know someone who is. Remember, as Walt Whitman once said, “Be curious, not judgemental.”
Curiosity is the wick to the candle of learning and with learning, hopefully comes acceptance.
May all your many parts be seen and loved by those you love and invest in today.
Written By: Kelli Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2023.
Sick and Tired of Feeling Sick and Tired, New Edition, 2000, W.W. Norton & Company, By Paul. J. Donoghue, Ph.D. and Mary E. Siegel, Ph. D, pages, 1-5; p. 9