Living with an undiagnosed illness can make you feel abandoned and alone. A therapist who’s been there explains why, and shares how to cope.
When you live in the impossible place of Sick and Symptomatic and Devoid of Diagnosis you are like a boat on the ocean with no sails. Bottom Line: You’ll need some oars. Because in our culture you are a rarefied patient (one with no name and no cure). You’ll have to paddle your way through this thing. Without the safety of a diagnosis and expectation of treatment and recovery, you’re in an off-road scenario where you’ll need to dig deep, grow a thick personal shell and hold on tight with courage and endurance — all at the same time.
So, you’ve been to the doctor again only to have your blood drawn, your labs read and your head scanned. Sitting in the tiny room with the white coat, you hear for the ump-teenth time that a level 8/10 pain is not normal for a person like you with no specific cause and there’s not much more they can do, perhaps you should try counseling. Here’s a prescription for Zoloft, now run along. OK?
Here’s the thing — you might be outside the lines of the medical world but don’t be outside your own lines. Here’s what I mean, as people we like to give everything a name, a definition, a label and a cause. But in your case, you’ve found yourself in unfamiliar territory because nothing lines up, there’s no label and no cause. The disease process inside of your body has yet to be named or discovered and there’s definitely no cure in sight. Or worse still, so few people have what you have that science has not given their all to find a cure. They’ve orphaned you and others like you. In the meantime, you live in isolation with your condition like a refugee in a camp on the edge of town. You’re in the margins. In case no one has told you this from the outside — that sucks. Your plight is awful and no one can really imagine what you’re going through.
Here are some ways to cope with being uncured:
Have a Teflon mind
Some of the friction of your outside-the-lines-life can be better managed with the use of something mindfulness teachers call Teflon mind. Teflon mind is the practice of letting hard things slide off of you and not taking things personally. Imagine your mind being coated in a non-stick covering so that unhelpful words and actions by others won’t stick. They can’t get in. The friend who avoids talking to you at the store; the parent who talks more about her new dog than about your struggles; the spouse who shuts down in the face of your suffering — Teflon mind lets it slide away.
Normally, our mind is like Velcro. Everything sticks. It is as if those hurtful experiences come wrapped in hooks and barbs and lodge themselves in our mind each time they happen. The outcome is that the pain stays firmly entrenched, taking up residence in our mental attic, making it feel cluttered and full. And our thoughts are no help. In our minds we return to the hurtful events over and over again replaying it like a tongue agitating a loose tooth 100 times a day. or someone with a chronic mystery living inside of them, ruminating about what others have done (or not done) for us means less energy for living and more pain from the tension of feeling misunderstood, discarded and alone.
Teflon mind can solve that. Instead of taking a stingy stance with others, harboring resentments and holding on to blame, I can be generous with myself by letting it go and moving into problem-solving.
It’s not denial, it’s actually acceptance. No one really understands me because they’ve never been where I am and for today, that’s OK. I don’t like it. I don’t agree with it. I would never marginalize someone else like that, but right now, it is what it is. Now, on to solutions.
In life we are accustomed to going through things together. We start out in a family of others, go to school in classrooms filled with people, seek friends to do things with and usually seek a partner to bond and go through life with. We’re pack animals. We are used to being in relationships and doing things as a community. Along the way we get important feedback about who we are, where we belong and that the world is (mostly) a safe place. When things go awry in our personal lives we also gravitate towards our clan. Have a bad day? Meet friends for dinner. Get fired at work? Call your parents or girlfriend to talk about it. Having a big event like a graduation or wedding? Make sure you invite your friends and family as our enjoyment of those things goes up when our people experience it with us. Lose a child? Show up to a very special support group of other parents with that experience and receive the crucial comfort and validation of people who “get it.” Interpersonal synchronization is a godsend.
Science even suggests that being in the company of others can change our behaviors, soothe our worries and heighten our pleasures. Neuro-mirroring, the science of being able to “feel another’s experience as if it were our own,” indicates that we are literally wired to be at our best when we’re with each other. But for those living in the margins with a mysterious condition or illness, we may have to figure out how to go it alone.
Those among us who are living with pain, sickness and disease and who do not have a clear diagnosis to share with our clan, are strangers in the land of connection. People don’t get it. They don’t know what to do with you and they will only try for so long until they give up. As humans, we are most comfortable with problems we can solve. So, when you show up like a question mark, inside of a conundrum, wrapped in an enigma, people get anxious about not being able to solve your problems so they cut and run. This is one of the reasons living with a chronic, no-cure-in-sight illness can feel so isolating — people drop you.
If you have been reeling with psychic upheaval over your isolated plight and the lack of support from your friends and family because you live with a phantom disease, you’ll need to look for help inside of yourself, your faith, literature, art, music and the occasional grace of someone else who also lives in the Mystery. In other words, pick the fruit where it’s ripe and don’t insist that the people you thought would help you step up and do so. They can’t — they don’t get it. And even worse, if you insist that they show up, they might make you worse! When people who don’t get it try to help they often (accidentally) give ill-placed advice, invalidate your plight or make painful comparisons between you and people they imagine are similar to you. The result? Mental suffering for you.
Some of us on the fringe of the medical world toil and worry so much about what was said by an inexperienced loved one or a dense, unfeeling doctor that we spend our limited energy reserves sinking into a pit of mental despair about how no one understands us and how life isn’t fair. Let me just say it: You’re right. The usual ways we get through life (as a tribe) might not be an option for you. Your family and friends may not understand and support you the way you need them to and the medical community may have dismissed you when they were supposed to have helped. You’ve been placed in extraordinary personal circumstances, so now is the time to rise.
Instead of keeping a detailed Bitter List of everyone who has done you wrong on this journey, learn to be your own magic and dig deep to find what works to take care of yourself. Lean into hobbies, the arts, inspiring music and sacred teachings to guide you – these timeless fountains can fill and contain you both at the same time. A well-timed Psalm or poem alongside the deep dish offerings of your own soulful practices like gardening or listening to a beautiful concerto will do more for your solace than your mom or best friends from college with all of their questions, subtle blaming and head shaking. Let them go. You got this.
Along with the Teflon mind, the idea of becoming a stronger person through the concept of resilience can help you shoulder the load of an undiagnosed illness and all that comes with it. In short: People who go through more learn how to handle more. They grow stronger by enduring difficulties. Essentially, they learn how to be tough by going through tough times. As a by-product of hanging tough through complicated and painful situations, you become a stronger person. And why does that matter, you ask? Well, let me explain. Strong people are in demand.
Our culture has a lack of people of depth. We have an abundance of people who can complain, troll, comment, criticize, bully, shoot guns into crowds and rant on TV but when someone is needed who can really suit up and show up, we often just hear…crickets.
When a crisis arises in those around you over the coming months and years (and it will), someone like you — who has faced great odds, endured the crisis of suffering at the hands of a phantom illness, and has learned how to live well in the question mark — is the type of person people want to be with.
Cindy Finch, LCSW is a clinical therapist, writer and professor who trained at Mayo Clinic. She works closely with those in the margins and is a survivor of an undiagnosed disease that turned out to be cancer while she was pregnant. Treatments for her cancer led to heart, liver and lung failure which she survived. She now lives in Orange County, CA and enjoys her life with her husband Darin and their three children. Along with other young survivors, her story is a part of a new documentary film called Vincible.
The information provided in this column should not be used for diagnosing or treating a physical or mental health problem, disease, or condition. If you have or suspect you have a medical or psychological problem, please consult your medical doctor or psychologist or appropriate health care provider. If you think you have a medical or psychological emergency, call 911 immediately