Invisible disabilites, or "Walk a mile in my body"

     I have a disability placard, two canes, and a walker.  I have a pain doctor I see every couple of months, at least six prescriptions involving pain (four of which are opioid-related), three supplements specifically dealing with pain, a medical marijuana card, a TENS unit, heat packs, multiple braces, CBD topicals and edibles, physical therapy treatments, and several otc medications I use as well.

    Yet, most people have no idea how much pain I am in on a daily basis.  I only use the disabled placard when I feel my level of disability on any particular day necessitates its use if I want to get everything done that day.  Even on the days I use the placard, it is unlikely you will see me using my cane or walker even though I may badly need them.  I look like an able-bodied person to most people.

    Why on earth won't I use my mobility aids if I need them?  It seems counter-productive. doesn't it?  However, when I use a cane or a walker, I am putting weight and stress on my wrists, elbows, shoulders, arms, and neck.  I had double cervical disc replacement surgery two years ago and I have carpal tunnel in both wrists.  While the surgery means I still have the use of my arms, it also means that certain types of stress and pressure to my arms or wrists cause me pain.  To use my mobility devices to prevent pain, I have to cause myself pain.

    My physical therapists have warned me about using my braces too often or for too long.  On one hand, they will lessen the muscle strength I need to keep my joints stable to counteract the damage my hypermobility syndrome causes.  On the other, they will reduce flexibility and motion in my hands, but they do help with pain and stability if used as prescribed.  

    The other thing the physical therapists have pounded into my head is NEVER limp. Ever.  Limping causes so many long term problems, so even when the pain is bad, my goal is to not limp because while it might help ease the pain now, I will absolutely pay for it later.  Even when my pain numbers are well above 5, I still try to do my physical therapy exercises every day through the pain because if I don't I won't be able to do anything very quickly.

    All of the pain medications come with side effects.  ALL of them have noticeable side effects that impact my daily life functions.  I have prescriptions to deal with the side effects of some of my pain meds.  Most of them impact my ability to drive safely which makes dosing medications dictated by my (and the children's) day's schedule more than by my pain levels.  

    What it comes down to is that on any given day at any given point you are seeing me at between a 2 and 7 on the pain scale.  I am never not in pain.  I am rarely not in pain that actively affects me even if I am on multiple medications for it.  The pain makes me tired.  I am also never not tired.

    The thing is, I am just one person whose story you haven't personally experienced, simply one person who, from a glance, seems able-bodied and healthy.  Any person you meet could be me.  Any person you meet could have dramatic, life-affecting situations they are dealing with while smiling at you and chatting about the weather.  Be kind.

Is insecurity really a character flaw?

This world equates attractiveness with confidence and independence.  There is a constant disparaging of insecurity.  People call it being clingy and needy, a character flaw that needs to be "fixed" and anyone who cannot "fix" it or at the very least hide it semi-successfully is a failure on top of the crime of being insecure.  This concept is no more than a hold over from when mental health care was electroshock therapy and real men didn't cry.

Lets break down the word itself.  Insecure means "not secure" and secure in this instance means "not subject to threats, certain to remain safe and unharmed, stable, and free from anxiety."  So basically being insecure means you do not feel safe, stable, and free from threat.

Say you are walking along and suddenly, with no warning at all, the ground gives out as you place your weight on it.  You fall.  It hurts.  You try to figure out what happened so you can avoid falling next time.  You pick yourself up and go on with a shrug.  A while later, it happens again.  Then at another point, again.  And again.  It gets to the point you never know which step will give out.

There is no pattern you can discern.  You just know that every time you walk there is a chance you will end up losing your footing this way.  Over time you learn to adapt somewhat.  You figure out how to catch yourself up short when you feel the ground give way.  You learn to walk more carefully, more slowly, always testing the ground.  You see other people running freely without a care in the world because the ground never gives way for them, and you are envious and at the same time glad they have safe footing even if you do not.

Now you know what it is like to be insecure.  You do not feel stable, or free from threats.  You never know if the next step is safe or not.  It does not make you a bad person.  It does not make you less than or not good enough.  It simply means that you are not in a space where you feel safe.

People with anxiety are by definition insecure.  Anxiety is a glitch in the brain, an over active fight/flight response, which in many cases is caused by a history of trauma.  You can move past insecurity (and anxiety) with time and patience, but it involves learning to trust that the ground will not give way without warning.  That is a hard thing to do when the ground keeps randomly giving way.  Think about the levels of courage and trust it takes someone to keep taking that next step knowing each time that it may be the one that drops them to the ground in pain again.

Many people can get from a place of insecurity to a place they feel secure if they work on it and if they have help and support, but insecurity is more often than not a symptom of lack of safety and stability in a person's life or past, not a character flaw and should be treated as such, not demeaned by the people who do not bother to understand it.

Doctors, specialists, and surgeries, oh my! Or why I have to laugh instead of cry

Many know that I've had some stupid health issues going on. It's really been doing a number on my self-esteem and my ability to cope with life in general. I decided to list everything from when the worst of it started, just to get an idea of what I had actually been through. Some minor things happened before this, but this has all happened in the last two years along with a lot of upheaval in my personal life. Putting this all down and seeing it in black and white was both shocking, depressing and uplifting all at once. It's a hell of a lot to go through in two years and, all things considered, I could be a lot worse off at this point. I am so grateful for health insurance and for the doctors that would actually listen, not to mention the people in my life who have stood by me and supported me through all of this. I couldn't have done it without you.

• July 2015 - Visited emergency room with stomach pain that at the time was believed to be related to my gall bladder and was told to see a gastrointestinal specialist.
• August - October 2015 - Massive amounts of tests with the GI specialist ending with a diagnosis of possible IBS and the definite diagnosis of a small hiatal hernia.  Given no meds and told to come back if it gets worse.  At this point I had 24/7 pain between a 3-5 as well as constant nausea and with unpredictable and uncontrollable diarrhea.
• January 2016 - Visited my primary care doctor and begged him to do something, ANYTHING, to help me.  He have me a prescription for Prilosec.  Three days later I was back to normal except for occasional pain or stomach flare ups.
• March 2016 - Diagnosed with severe anemia.  Talked with primary care doctor about switching Prilosec to a medication that was less likely to block iron.  Switched to Pepcid.
• April 2016 - First iron infusion.  Started weight loss medication.
• April 2016 - July 2016 - Hand therapy for carpal tunnel and tendonitis (again... it was my third round of hand therapy since 2012, I believe).
• June 2016 - Bunion surgery.  Intense pain response. Keloid scarring.
• August 2016 - Second iron infusion.  Hysterectomy with a bad pain response and poor recovery needing additional meds and several months more recovery than expected.
• October 2016 - Surgery to remove screws and Keloid scar from my foot.  I’ve now had plastic surgery!
• December 2016 - March 2017 - Physical therapy for my foot.
• March 2017 - May 2017 - Physical therapy for my hip and posture.  Cold laser therapy.
• March 2017 - Emergency scleral banding surgery for a prolapsed retina.  Extreme pain response and an overnight trip to the ER.
• April 2017 -  Asperger’s/high functioning autism diagnosis.  Stopped weight loss medication with a loss of over 30 lbs.  Started the muscle relaxer cyclobenzaprine.
• June 2017 - Fibromyalgia diagnosis.  Started a trial of Lyrica.

Firbromyalgia is:

• Waking up tired and hurting more than when I went to bed.
• Having to schedule recovery days after any day where I exert myself at all.
• Ditto for days when I encounter any stress.
• Doctors not believing my pain levels.
• Considering a pain level of 3 as baseline normal.
• ITCHING for no good reason!
• Cold and tingling feet when it’s 80 degrees outside.
• Never knowing ahead of time how functional I will be on any given day.
• Memory issues even worse than those caused by the brain damage.
• Suddenly struggling to focus on things when I have the ability to hyperfocus.
• Never knowing when my gut will behave itself. (Bonus: This is exacerbated by the hernia.)
• Having to relearn my physical capabilities.
• Trying everything possible to get relief, but only finding a few things that partially help.
• Having to budget my spoons/spells that much more carefully.
• My skin being so sensitive that clothing hurts.
• How does pain burn???
• Relief in knowing that there is an explanation and that it’s not something worse.

They Never Told Me: Ruminations on Aging and Expectations

When I was a little girl I would roll out of bed, brush my teeth and all that, eat breakfast, get dressed (yes, in that order), and go outside and be active, or read, or build things. Other than school, little interfered with my free time. I never forgot what I was doing mid-process. I never was too sad, tired or in pain to want to get out of bed. I never thought ahead to meter out my time and energy so that I could make it through a day. I rarely worried about anything. There was nothing I couldn’t do if I tried.

The picture that is painted of adulthood for children glows brilliant with possibilities and freedom. Kids don’t see work hours and drudgery. They don’t see bills and bank accounts dipping dangerously low. Kids just see money to do things with and no adults telling them what to do or how to be. They don’t see the bosses, co-workers, other parents and community out there placing pressure on adults to adult correctly. Children don’t see doctor visits and pill caddies, medical tests and diagnoses. They don’t see doctors dismissing symptoms and insurance companies refusing medicines. Adults actively work to hide these things from them so as to not scare them about the stability and permanence of the adults in the children’s lives. Kids think everything is superheros and roses until someone grows old and grey and retires; then they go on cruises.

It’s part of the narrative we give children that falls apart as they grow up and the magic fades, along with belief in the tooth fairy and Santa Claus (I still believe though, he’s the Spirit of Giving and I dare anyone to tell me that isn’t alive during Yuletide.) Still, I wish I had known or at the very least had some awareness of how complicated it can be to be an adult. I might have enjoyed my body more while it still ran smoothly and had power and energy. No one tells you that your body might start to malfunction while you are still in what is considered the prime of your life. There is no guidebook available for the transition from capable to struggling.

Even other adults brush it aside with platitudes because everyone has aches and pains when they get older, you see. It can’t really be that bad, after all everyone gets tired now and then. Everyone gets sad and worries about things. Just cheer up and you’ll feel better. Adults are expected to suck it up and deal. We are supposed to get on with the adulting and not let things like chronic pain, fatigue, depression or anxiety affect us. Even other adults don’t want to face the reality of chronic conditions before retirement age: eyes closed, fingers in the ears, la la la la la la…

The thing is that it really is just life, but it’s a part of life that people hide. It’s not currently “normal” in modern society so we don’t want to see it or hear about it. There was a time when children grew up around birth, aging, and death. They lived life as part of the cycle, not apart from the cycle. Heck, they used to know that beef came from a cow, not from a pack at the market. Kids only know and accept what they are exposed to.

If we stopped hiding the less pleasant possibilities of life from, not just kids, but also adults, I can see life changing for the better for many people. I’m not saying to shove down children’s throats that being an adult can be difficult and that you never know when your health will fail, just stop hiding it. Stop pretending that everyone can do everything, all the time, perfectly. If it became accepted that some people just don’t have the energy or capability to be running their type A personality game 24/7/365 and we just started accepting that people will do the best within their abilities at that moment think of how much smoother life would run and how much happier everyone would be with less pressure to live up to.

The Curse of Invisible Illnesses

The hardest thing about having an invisible illness (other than coping with the illness itself) is that people do not understand the symptoms and can judge others for them. This happens even within communities of people who have the same, or similar, invisible illnesses or who are caretakers for people with them. The problem is in so many cases symptoms manifest differently for different individuals even if they suffer from the same illness. In addition to that, people expect certain behaviors and actions to mean certain things. On top of the challenge living with the invisible illness, people need to navigate the often rocky roads of social interaction that are only made more treacherous by their condition.

Invisible illnesses affect people's interactions with others on a daily basis. People who do not live with these challenges often have trouble understanding how much it can limit the person with the illness or how different that person's experience of the world is from theirs. When someone is affected more or less by their illness than another person it can change the entire experience making one person's life completely different from the life of another with the same diagnosis.

Take, for example, two individuals with Autism Spectrum Disorder. One might be non-verbal and have some mental delay, but be able to adjust to change and deal with chaos, while another could be brilliant, but meltdown over the slightest change in schedule and be unable to eat food with any texture to it. These are extremes, but you can see how the two individuals would have very little understanding of the other's struggles even though they have the same disorder. You could make the same comparisons for anxiety, depression, and even physical conditions like Chron's or hiatal hernias. While the majority of individuals will have similar symptoms those on the extremes or those with multiple conditions or complications will have very different experiences than the norm.

Society depends on social constructs. For example, white lies are considered just part of life to most people, the grease for society's wheels. “How are you?” is answered by, “I'm fine and you?” whether or not the person is actually feeling fine. How about when a person, say with autism, does not understand the concept of lying? When every answer is the straight truth? That person is thought to be rude, abrupt, and lacking in manners, maybe even self-centered, but that is just how they are. There is no intent to upset the people they are talking with. So something that sounds positive, difficulty lying, becomes something that sets the person apart from others and not in a positive way.

Most people read others' actions based on their experience of the world and within the framework of societal constructs. This works most of the time for most people until complications like invisible illnesses are thrown in. The easiest way to avoid the problems that can spring from this is to not judge, specifically to not immediately judge negatively. Consider what could cause the person to do what they are doing beyond what your knee-jerk reaction to it is. Ask them if the motivation for an action is unclear and then believe them when they tell you. Most important of all, never tell the person they do not have the challenges they say they do or place moral judgment on them for actions necessitated by their invisible illness (like canceling plans due physical or mental complications, not understanding subtle cues, meltdowns, panic attacks, etc). Dealing with the physical and emotional impact of invisible illnesses is hard, throwing in having to dodge the misunderstanding of others based on it is something most people never expect when they get their diagnosis.

There is a wonderful article, The Spoon Theory, that explains part of what living with an invisible illness is like: http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/