The emotional scars of medical treatment with zero answers

The emotional scars of medical treatment with zero answers

I’m feeling angry, frustrated, sad and afraid. I’m trying not to cry as I write this. I’m writing this for two reasons. It helps me understand my thinking and feelings better when I write them out. I also want to help others who experience this to feel seen.
If you experience medical trauma,  you know it can show up suddenly and overwhelm you like a flood.
This past weekend was particularly difficult, with a combination of back and leg pain with extreme fatigue.
After waking from a nap last evening, I noticed it was past dinner time and I was feeling hungry. So I decided to go downstairs to make myself something to eat.
It took all my strength to fumble down the stairs and into the kitchen. As I stood in front of the fridge, winded and mentally foggy. I felt so weak I could barely stand, let alone make anything. 
My family was right there, and I could have asked for help. But I’m so sick and tired of needing so much help, all the time. I was feeling guilty for needing so much, and like I’d burden them by asking because they were relaxing in front of the TV. In that moment I was fed up.
When it becomes too much
I went back to bed and began sobbing from the intense frustration and helplessness I was feeling.
My wife entered the room at some point and asked me what was happening. The crying became more intense as I put words to the feelings.
“I’m terrified,” I began. “All they do is charge me thousands of dollars on all these tests and they never find anything. I just keep getting worse and I have no idea what the future holds for me.”
I was focused on the EMG I was to undergo the following morning (this morning). An EMG involves sending repeated electrical shocks down my leg to see if the nerves are conducting nerve impulses the way they should be.
I’ve had this test at least 3 times before, each time the results showed nothing wrong.
The last EMG I had lasted 3 hours as they checked all 4 limbs. Electric shocks, over and over, stronger and stronger as they look for nerve problems. I was physically and emotionally exhausted after that. I felt like I was submitting to torture, only to have the results come back – normal.
It’s easy to feel unseen, unheard and alone when the doctors keep saying they don’t know why, and therefore have nothing to treat. All the while I’m questioning whether its actually in my head.
So last night, I began feeling helpless as I imagined enduring another 3 hours of that pain, on top of the pain I already have. Only to be no closer to an answer.
It felt like Einstein’s definition of insanity – doing the same thing over and over and expecting different results (See Note).
Living in a country with a capitalist health care system has left me with crushing medical and personal debt. My ability to earn what I need to overcome it, depends on my symptoms being managed well enough to function.
They aren’t well managed because the doctors can’t find an answer that fits their paradigm. I have Multiple Sclerosis and Hypermobile Ehler’s-Danlos Syndrome. They have overlapping symptoms so deciding what to treat has been a problem.
The closest EDS expert my Neurologist recommends is a 4 hour drive away. I can barely get out of bed anymore let alone withstand a 4 hour drive. A flight would likely be even worse.
My condition has been declining for years, and since December has been picking up speed. My back and leg pain has been unmanaged for two months, and I feel like I just get to feel miserable while my doctors scratch their heads.
As my legs become weaker, my house is becoming increasingly unsafe for me. Especially walking up and down the stairs.
There are no resources to help me get the accommodations I need because I’m in the income bracket where I make too much to qualify for government help. Private organizations say I make to much as well. But I don’t make enough for the thousands of dollars it would cost to pay out of pocket. 
I’m between a rock and a hard place that keeps getting tighter. I know I’m not alone in this because I’m connected with online communities full of people with this experience.
Finally, An Answer! Kind of.
I experienced tremendous relief when the tech told me the test would only take 30 minutes. My doctor only ordered the test for my left leg, which has increased foot drop since December of last year.
The good news is, they actually found something this time – neuropathy. I’ve had all the symptoms for the past 8 years and only now has it shown up on one of their tests. Now they get to figure out WHY it’s happening.
This means more tests, more money, and more calls from debt collectors. This is a part of the medical trauma in my experience. It’s common in the U.S. for people to have to choose between medical treatment or paying the electric bill. What kind of inhumane, profit driven selfishness is this?
What’s next?
I’m home, in bed, writing this before taking meds to calm things down enough for me to rest and recover from the emotional battering I experienced last night.
If you know me, you know I’m solution-focused the majority of the time. But there are times when my carrying capacity is exceeded and I collapse under the weight.
I’m only human after-all. I always find my way back to being driven by my blessings instead instead of my burdens. I just need a little time.

Note: though this quote has become synonymous with Einstein. It actually originated in a novel by Rita Mae Brown. Yes, I live with autism and often obsess over details.

Transforming a Neurodivergent diagnosis into an opportunity for self-discovery

Transforming a Neurodivergent diagnosis into an opportunity for self-discovery

When my oldest son received a diagnosis of Asperger’s Syndrome at 7 yrs of age (now 25), you’d think he was diagnosed with a terminal illness.
The majority of folks responded by saying, “I’m so sorry.” I imagine they envisioned a worst case scenario or didn’t know what else to say.
I’ve worked with hundreds of families over the years, and a main determinant of how they responded to the diagnosis, was whether their thinking was predominantly problem-focused or solution-focused.
It’s crucial the diagnosis lead to a more empowered approach. So you can become the captain of the ship instead of floating aimlessly at the mercy of the waves.
It’s understandable to feel shell-shocked, if the diagnosis comes out of the blue as it did for us. Our son’s reaction to the school environment is what sounded the alarms.
Being a social worker, I immersed myself in books and research so I’d know exactly how to support him.
Not everyone responds as proactively. I’ve met parents where one was angry, in denial, and cursing the professionals for labeling their child. While the other took a more compassionate, curious approach.
When you aren’t sure where they land on the continuum of acceptance? You could ask, “Now that you know, how are you feeling about it?”
Allow them to tell you how they see it, versus defaulting to seeing it as a loss. Remember, you want to support them from where they are, versus where you think they ‘should’ be.
For many adults receiving a late diagnosis, it can be interpreted as confirmation they’re broken. I’ve encountered this many times.
Or its experienced as the liberation and validation that there’s an explanation for why life has been so difficult. “It isn’t me, I’M not the problem! Now I have a better idea where to look for strategies to help make life easier.”
The latter is a more empowered approach. Empowered meaning a lens focused on seeking opportunities to take action, to improve the outcomes you experience.
Point of transparency, when I received my own diagnoses of Asperger’s at age 35 (now 53), I had an identity crisis.
I’d created a perception of myself as a father and professional that helped protect me from my plethora of insecurities. The psychologist who diagnosed me was a calming, compassionate woman who helped me feel safe while I took it all in.
She helped me reframe the news as an opportunity to better understand and care for my own needs. It also provided an opportunity to learn how to connect with and advocate for my son.
The lens you choose determines whether you even believe options exist to create a happier, more fulfilling life. For you and for your child.
The good news is, even when you do begin with a feeling of helplessness or overwhelm. That can be a temporary experience as you begin to realize there are things you can do, books you can read and people like me who can guide you.
The more you understand, that the diagnosis isn’t a wall to spend your life banging your head against. It’s a new door, that once opened. Gives you a place to begin again.

Why the ‘Interest-Based Nervous System’ Narrative Falls Short

Why the 'Interest-Based Nervous System' Narrative Falls Short

It’s said that people with ADHD have an interest-based nervous system. In that it responds only (or primarily), to things of particular interest to the individual. And having no interest in the have to’s of society (e.g. chores, homework, and so on).
I see so much more happening here.
I see an all-or-nothing nervous system focusing on pleasure, entertainment and avoiding everything that may cause frustration.
The things that interest us are things we’re good at and can experience with minimal resistance from our executive functioning glitches.
I, and many other adults with ADHD I know, found our way free of this paralyzing dichotomy through emotional regulation. If you can work through the frustration, you can do plenty of things you find boring, uninteresting, you name it.
This is key to navigating the academic and employment environment more easily. You simply can’t expect to make progress when you default to, “I don’t wanna, that’s boring”.
Its a disservice to offer up this assessment of our nervous system in a fixed way. The reality is the brain is more nimble than we give it credit for, and a diagnosis doesn’t equal destiny.
Reaching your potential requires you to build upon the foundation you’re given. Choosing to rest upon it, and little more, is a waste of all the joy, safety, and togetherness that could have been experienced by countless others.
If only you’d chosen to build. It doesn’t have to be perfect to be useful, it just needs to come from you.

Neurodivergent folks experience many workplace challenges, including…

Neurodivergent folks experience many workplace challenges, including...

About 30-40% of people with Neurodivergence are unemployed (Source).
One thing that gives me hope, is seeing more members of the Neurodivergent (ND) community expanding their view of what’s possible. Another is seeing more companies proactively seeking to include Neurodiverse folks in their workforce. I’m even more grateful a few companies have sought me out to help guide this effort.
To help with self-advocacy and accommodation, here are some challenges ND folks may experience in the workplace.
Sensory overload: This is a biggie, and can happen quickly. I’m sensitive to bright lights, light touch, certain frequencies of sound. Many ND folks can be hypervigilant waiting for a sensory assault to happen. This makes focus and productivity difficult to maintain.
Communication gaps: Missing nonverbal cues is the tip of the iceberg. There may be literal thinking, all-or-nothing thinking, overthinking. I routinely got in trouble early in my career by calling out office politics as “stupid”.
So many misunderstandings, conflicts and hurt feelings stem from these communication gaps. Self-awareness work, self-advocacy and skill building can go a long way in reducing misunderstandings.
Executive function blips: Executive function skills, such as time management and planning, can be a challenge for some ND folks. This can make it difficult to complete tasks efficiently or meet deadlines. These challenges can be particularly disabling in the following ways:
  1. Discrimination: The dynamic nature of ND conditions can send mixed messages about what a person is capable of in the workplace. They can be labeled lazy, accused of making excuses. This can lead to friction with co-workers, poor reviews and prevent growth opportunities with their employer.
  2. Lack of accommodations: We may need accommodations, such as flexible work schedules or quiet workspaces, to perform our best in the workplace. However, many employers may not be aware of these needs or may be resistant to making accommodations.
  3. Mental health challenges: The stress and pressure of the workplace can exacerbate mental health challenges that ND folks may already face, such as anxiety or depression.
  4. Job interviews: The job interview process can be particularly challenging for ND folks. Difficulty with non-verbal cues, auditory processing issues, or difficulties with social interactions can make someone appear undisciplined and unconfident. But in the right environment, with the right supports, they can be some of your best and most dependable employees.
Overall, a commitment to continued education by employers, and a dialogue with employees about what’s working, and what could work better. Are keys to creating a win-win environment where everyone feels seen and supported.

It isn’t that you’re lazy it may be resistance to frustration

It isn't that you're lazy it may be resistance to frustration

What many call lazy, may be resistance to feeling frustration.
Because of executive function blips, Neurodivergent folks can experience frustration as part of the process for getting things done.
We may experience continuous disruption from working memory, distraction, not knowing where to start, and so on.
It’s like driving fast down a road full of potholes.
The feeling of success is more like, “Oh thank God,” than, “Yaaay, we did it.”
Procrastination can be sourced by this resistance. You avoid trying to implement things because so much of the process can feel so frustrating.
Depending on how you’re feeling physically or emotionally that day. You may not have the resilience you need to manage difficult emotions.
I’ve developed a toolbox of strategies to help me persevere through even the toughest emotions and circumstances. Skills to manage the frustration, AND get more done.
Watching them become increasingly confident and unstoppable is a joy to behold.

How stigma can make school harder for neurodivergent students

How stigma can make school harder for neurodivergent students

How do stigma and misconceptions around neurodiversity negatively impact students in schools and the difficulties they face.
Here are some specific examples:
Confusing behavior: I learned later in life, that many peers wanted to befriend me. But the way I showed up in the world didn’t provide them with familiar nonverbal clues that I was open to be approached. We can be restless, and fidgety as we work to regulate ourselves.
We may avoid eye contact when nervous or to hear better when visual stimuli is overwhelming.  People being people, tell themselves elaborate stories about what our behavior means. Those stories typically become the basis of stigmatized behavior toward us.
Bullying: I lived in fear growing up, I was a perfect target for any peer who was hurting (likely not encouraged to show emotion). They wanted to get their own anger out on someone who wouldn’t fight back. I pulled my son from middle school when he became suicidal from relentless bullying the school failed to address. Many educators believe the solution is for ND students to not make themselves a target. Victim blaming anyone?
Lack of Supports: Their may be more students who need a diagnosis than actually have one. I didn’t learn about my ND until I was an adult. Many schools resist diagnoses as do some parents. That leaves the ND child to navigate the chaos of school, relationships, all the executive functioning tasks. All with no school supports from an IEP, special ed staff, classroom accommodations.
Punishment for Symptoms: I continue to hear stories about ND students given detention or suspension for behaviors related to their disability. My son would often leave his classroom when feeling anxious. The staff wanted to focus on teaching him not to leave instead of dealing with why he kept leaving. It was all about the needs of the classroom while ignoring his needs. They kept calling me to pick him up from school for repeatedly leaving the classroom
Judgement: People fear what they don’t understand. I remembered being told I was in the “stupid people class” because I had challenges learning math. School kids rarely include ND students because it isn’t part of the school culture. We can be seen as dumb, slow, you name it. Simply because we may use our voice, language and body differently than what others are accustomed to. I missed out on a lot of friendship and extracurricular activities because I didn’t know what I needed or how to express it. Without a diagnosis and IEP, legally the school could say I’m not entitled to any supports.
Mental health: It may go without saying that being ND is hard on the nervous system. Especially when the demands of school lack any consideration for the amount of self-care an ND needs daily just to recover from being there. Let alone having to keep up with work they’ll probably never need to duplicate after graduation. The low self-worth, 24/7 anxiety, depression, suicidal ideation. The social alienation, feeling alone in their experience exacerbates it all.
We simply cannot continue living in a society that champions selfishness as a virtuous lifestyle. Me, me, mine, mine, those others, better them than me. None of us makes it alone. Time to stop leaving so many people out.Working with students and parents to navigate all these challenges is something I excel at doing. Getting my 1-2-1 attention is where its at!

When Holidays and Neurodiversity CLASH!

Holidays aren’t joyous for everyone, right?
I remember becoming anxious to the point of tears most holidays. I was often sent to my room “until I could get a hold of myself”. Until I could suppress the feelings inconveniencing others.
My mother had a large family so gatherings were packed. Overwhelm came swiftly. Not only because of the noise, and the body’s constantly bumping into each other, but the fact that I never really felt connected to anybody there.
I grew up with undiagnosed Autism and ADHD (forms of Neurodivergence – ND). So I really didn’t know how to connect with anyone. I felt like a stranger in my own family, still do. Not to mention, I was born on Christmas. Everybody seemed to forget my birthday year after year after year, (except mom and my grandparents). THAT matters a lot when I look back.
I recall a conversation with a client who was emotional over the idea of being made to go to the family Christmas gathering. She has ADHD and difficulty regulating her emotions, especially when under stress.
She catastrophized whenever imagining being at the holiday gathering. 
What parents by and large don’t get is what it costs people with ND who have difficulty regulating their emotions, regulating their stress response, regulating the intensity and how their body responds to it. The temperature and the environment, regulating how your body responds to sound, how it responds to lights, if there’s pictures being taken.
There’s so much coming in that a dysregulated nervous system has to account for, and try to keep you mentally and emotionally in balance. While doing all that, you’re expected to be pleasant, on your best behavior. It just doesn’t work if you need to perform with your needs unmet.
The luxury of hindsight demonstrates that I was overloaded, dysregulated and lacked the tools plus supports to navigate those experiences. I understand that now.
I encourage my ND clients to opt-out if experience shows their needs can’t be met in a way they’d enjoy themselves. I’m not saying submit a list of demands to the host to earn your attendance.
Know yourself well enough to spot when the venue, the size or time of the event just doesn’t work for your nervous system.
Traditions like Friendsgiving grants you more quality control over the size of the gathering, so you can have a more subdued and quality experience with others.
You want and need people in your life, the right people. But its extremely difficult to have a relationship with them all at once, when you pack them in a room together. Amplifying their noise, their smells, and so on.
Parents, spouses, family members, coworkers need to get this. Regardless of what you believe tradition demands. Regardless of how much meaning you put into the fact that it’s important to have everybody together on holidays. That’s a story. It’s not a fact. It’s not a must. It’s not something that absolutely needs to happen.
Another story is how miserable your loved one becomes, when they are guilted or forced into a scenario that’s going to cause them unnecessary suffering. You really want to support your ND loved one during the holidays. Don’t make them go. Let them stay home and take care of themselves.
If they want to connect with the individuals at the gathering, give them a way to do it. Let us zoom in for a little bit. We’re in that day and age now, right?
Those in attendance can send a text, email or card telling the ND family member they miss them, and share a supportive message. That helps us feel seen and connected, even though we aren’t physically there.
I know, these suggestions may go against your instincts, as somebody that doesn’t have these issues. But when it comes to somebody with ND, take their word for it, that that environment is too much.
We don’t experience gatherings the same way you do. We don’t usually thrive in group environments, we more often thrive one on one or smaller groups. So please honor our needs.
Please take this in and take it to heart. You may think you’re helping a person grow, by putting them in these challenging settings and saying, “This will toughen you up. This will teach you more resilience. This will teach you how to deal with situations that are tough to get through.”
It may show them they made a mountain out of a molehill, it may also be traumatizing. We can enjoy holidays, though we’re often best served by creating our own traditions, so we can experience the holidays with ease versus anxiety and belonging versus simply, longing.
May you experience ease this holiday season.

How I maximize gratitude…

I was asked again this morning (paraphrasing), “How can you be so positive and upbeat with the challenges you face each day?”
One way is by maximizing gratitude.
If something pleasant happens, I say, “Thank you.”
If I encounter difficulty (e.g. I knock something over, I bump into something), I say, “Thank you”, because it gives me an opportunity to practice patience, and self-compassion.
When I feel physically comfortable, I say, “Thank you”, because I’ll have more energy to create, helps clients, and be with family.
When I’m in too much pain to work, “I say thank you”, because I have people to help me, and a business that can withstand my absence.
I say, “Thank you before I go to sleep”, and “Thank you when I wake up”.
The lesson here is that everything is a lesson.
They show you what is working, and where work is needed.
Either way, there’s so much too be grateful for in this life.
You’ll find endless opportunities among the things you take for granted.

You don’t have to overcome to move forward

May be an image of 1 person, outdoors and text that says ''I haven’t overcome didly squat.
I may give the appearance (at times), of being unstopped by my disabilities. That’s more a testament to my resourcefulness, and tenacity than anything. 
What I’ve done is carefully chosen to have an empowering relationship with them.  I refer to my diagnoses as my “teachers“. I’m in a perpetual boot camp of character building.
There’s more to this way of thinking, of course (it’s something I teach in my Inner Circle). Self-compassion, being present, better able to manage my emotions, and maintain calm.
This because I’m not at war in my thoughts about the reality of my circumstances (except on occasion).
I’ve learned to co-exist with adversity, and use it as a vehicle for increasing self-discipline.
When life gives you tons of manure, you thank it for the fertilizer, and return to tending your garden.

Why he knows what to do, and just doesn’t do it…

You explain to your child as clearly as possible what they need to do, and they still don’t do it!
You can share your best strategies with them, fountains of wisdom that never seems to get applied. What gives?

In my experience:

  • Executive function gaps (e.g. planning, getting started, memory, etc).
  • Perfectionism
  • All-or-nothing thinking
  • Risk-aversion
  • Fear of failure or success
That’s the short list.
When you’re raising a child, living with a spouse or working with a colleague diagnosed with (e.g. Autism, ADHD, Dyslexia, and so on). You’ll bear witness to wells of competence along with oceans of struggle.
They don’t always know why they struggle, only that they do. So they may lack the language to describe their experience, and self-advocate effectively.
I spoke with a parent this morning who’s experiencing this now and we created a plan to help his child increase his ability to think in the gray area, and develop more curiosity to buffer his fears about taking risks.
There’s more to this of course, the breadth, and depth of my education, and lived experience are a powerful combo here. It allows me to provide solutions that are personal, a fit for that person and their values.
It isn’t enough to learn tools, and strategies. You need to thoroughly understand what makes it difficult for your brain to use any of it. Are the reasons neurological, psychological, emotional, a combination?
The answer is all of the above. Like this parent, you can’t be expected to navigate this minefield alone. I have my group of experts as well, have since the beginning.
There’s a myth that parents are supposed to have immaculate perception when it comes to knowing their own “flesh, and blood”. To know their child better than anyone.
Countless parents have beaten themselves up for not having encyclopedic knowledge of how to raise a child with such unique, and complex challenges.
Most folks barely know themselves. How can they be expected to open themselves to the raw truth of their child’s experience, when they’re in so much denial about their own.
I’ve learned how to break through the resistance I described earlier. The stuff that gets in the way of you, and your child sharing their brilliance with the world.
Remember, it isn’t what you know, it’s how well you can apply it.