Coming to terms with being disabled, but not legally so

Disability is defined as a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits, a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions and as an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment. (from www.merriam-webster.com/dictionary/disability)

By both parts of that definition, I am disabled.  My conditions, all put together, significantly limit me on a daily basis and I have not been physically able to work a full-time job, or even a regularly scheduled part-time job, for years.  It's been a struggle as it is to educate my children, be my son's aide twice a week at school up until this year, and squeeze in as much side work as my body will allow.

This has been something that has been very hard for me to come to terms with.  I kept hoping things would get better and I would miraculously go back to the functionality I had for most of my life.  It is amazingly hard to accept that this body that I inhabit, that for years was very responsive and obedient to my wishes, that allowed me to work construction, do marathon arts and crafts sessions, and that birthed, fed and lugged around two children, now can't pick up a gallon of milk some days.

It was even harder to come to terms with when so many people kept saying things like, "Oh, it's just the aging process.  Everyone has aches and pains when they get older."  I'm turning forty-two this year.  The vast majority of forty-two-year-old women with my history and habits are not in constant pain every day, but the message of "Suck it up and deal," is a very powerful one in our culture if you are young (enough) and appear to be healthy.  

That's the other thing, I look healthy.  I'm not wheelchair bound.  I don't need a cane (most days) or slings/braces (also most days).  Generally, none of my issues show on the outside.  In fact, to try and improve symptoms, I lost a lot of weight.  Now I am more slender and still have all the health problems I did before.  People notice the weight loss, not the limp (in part because the physical therapists pounded it into my head to avoid limping if at all possible) or the careful way I have to get up and down from a seated position or the fact I often avoid carrying anything remotely heavy or how I freeze when faced with sudden change.  

The long road to finding actual diagnoses did not help the process.  It was one problem stacking on top of another, stacking on top of another over years.  It turns out in the end that many of them are intertwined symptoms rather than diagnoses on their own.  The whole process, from beginning to end, from the time I first started trying to solve some of the related health issues was at least five years.

When I finally admitted to myself that maybe, just maybe, I'm not going to get back to a point where I can work reliably, I looked into going on disability.  What I learned is that the system is rigged against people like me.  It sounds cynical, but unless you have worked enough in the past five years to have earned enough credits then you do not qualify for SSDI.  I obviously haven't because I have been disabled and trying to recover to a point where I wasn't and, on top of that, I was raising my kids, homeschooling, and acting as my son's aide on a volunteer basis, none of which counts for disability credits.  

I also don't qualify for SSI which is where I was pointed when the credits problem was explained.  To qualify for that, I would have to get divorced and get my name off one of the cars, close my business bank account, etc and so on because we make too much as a couple for me to qualify for that either.  The cut-off, by the way, appears to be $1500 a month for a couple at least in California and you can't really have any property of any value.  While that is just above the federal poverty level for a couple, we have two dependents which doesn't seem to be factored into the SSI information at all.  

Not to mention that finding ANY clear, concise information concerning requirements and income levels and all of that is a full-time job in and of itself and caused me massive anxiety attacks.  The Social Security Office wasn't helpful.  The local support agencies weren't helpful.  Even my health insurance company which has a kind of advocate for such things wasn't helpful.  It feels like the whole process is set up to make people give up.

(This was written the summer of 2018 and I forgot to publish it then.  Some things have changed and I hope to post about them soon, but I figured I should put this up in the meantime.)

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/