First of all, thank you so much for everything. Even if you don’t believe it, you are doing the best job with raising your children.
I am a child of a chronically ill mother. And I am thankful for it. I wouldn’t change one single day.
To my mom: Growing up, seeing your good days and your bad days, I’ve learned to put value in the little things. I enjoyed laying in the grass with you and imagine what the clouds look like. I never needed to go on vacation. You couldn’t. So I couldn’t. But I was never mad at this.
We have always been a team. I grew up as someone you trusted, and you knew I had to grow up faster because you needed help. And I’m sorry I didn’t see the help you needed. I helped you, but I could have done more.
When I suffered from chronic pain at a young age you knew. You knew what it was like. And you believed me. You still do. I am 25 now and I still don’t have a definite answer. And you still believe me because you know. You know what it is like to spend way too much time in a doctor’ s office.
I learned so much from you. Value the little things, enjoy the good days, tolerate differences and embrace them. Be nice to others, as you don’t know what the other person is going through. Give unconditional love.
And now, being chronically ill myself, I’ve learned how to cope because of you. To find the strength to push through if I absolutely have to, and to laugh. Laugh against the pain and all circumstances.
I learned so much because you are chronically ill, because you had to define new values for us when you became sick. And I am grateful for it. I knew life could have been easier without your struggles and I always wished I could take them from you. But, at the end of the day, you’ve been the best mother I could have wished for.
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I face many challenges in my lifetime as a person with spina bifida. But the challenge I faced in the summer of 2014 was a new one and really hampered what I could physically do. That summer, I had a diagnosis of spinal stenosis… in essence, a narrowing of my spinal canal.
That picture is me in April 2008. See the neck brace? That’s a result of C1 and C2 vertebrae in my neck having been fractured. I hear you asking, “How’d that happen?” It was, believe it or not, a simple head turn. That’s it. I was at my computer, turned my head to look at the TV, and crack went my neck, and down I went in pain. Freaky thing, that.
Fast forward to July 2014. At first I didn’t know anything was wrong. On July 1, I went about a normal “first of the month” for me, which involved some errands. On this day I happened to cap it off with a visit to my mom’s new office in Fort Mitchell, Kentucky (a suburb of Cincinnati). The office sits atop a hill. With a bus stop at the bottom, I had to climb the hill to get to the building where my mom worked, and of course I did. When I got home that evening, my spine pressed the big red “screw you, I ain’t moving” button. So did my arms. But I thought I had just overdone it. So I tried to scale back on my walks, which at the time were typically two to four miles a day. I still walked, but I tried to slow down.
That didn’t help. By July 5, I was noticing other symptoms — my fingertips were going numb, my arms felt like lead weights even when sitting still, and of course my neck and back still hurt. The first two set off alarm bells big time. I was already set for an appointment on July 8 with my regular doctor, so I went and explained my symptoms. He immediately decided I needed to have an MRI (Magnetic Resonance Imaging) scan. I had it done July 18. That’s a 10 day turnaround. And in the immortal words of Ron Burgundy, “Well, that escalated quickly!”
By July 18 at 11:45 PM:
— I was put on a corticosteroid.
— I had my doctor calling me at 10:30 at night (on a Friday, at that) to tell me the severity of the situation… his office closes at 5 p.m.
— I had a referral being put in for a neurosurgeon.
I had herniated discs at C4 and C5, I suspect when climbing that hill on July 1. When climbing steep hills, my head would move forward and back with each forward motion I made to push my chair. That on top of the fact that my spinal cord was already narrowed caused severe issues.
The summer of 2014 was the most frustrating of my life. Not only was I in constant pain, but my left arm was all but useless. My right arm felt like a lead weight too. And my strength? Gone like a barn in a tornado. No longer could I lift from the floor to my wheelchair in one smooth motion…I had to go from floor to couch to wheelchair. It got so bad that once, when I made a bathroom stop at the public library, I had to have security assist me to get back up into my chair. On top of that, those walks to the mall or other places I wanted to go took double the amount of time they had pre-injury.
For the rest of the summer, my life consisted of doctor’s appointments. I went from the primary doctor to the neurosurgeon, then back again. Finally on October 2, 2014, I had an anterior cervical discectomy with fusion of my C4 to C6 vertebrae, and spent three months doing little more than the continued shuttling between Cincinnati and what was then my home in Florence. I couldn’t go anywhere at all on my own… I had to be driven. That was aggravating.
While I haven’t had a similar issue since, I now know what to expect. And I won’t allow myself to be frustrated. Summer is for fun, and if I can’t have fun in the ways I usually do, I will find other things I can do.
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In my job, I am responsible for identifying and discussing disabilities in school children. In my personal life, I make it a point to name and discuss my disability when the occasion or need arises.
As policy at my job, a student’s disability is “confidential.” I understand why this policy is in place. Parents and students — especially those acclimating to a new eligibility — can be extra-sensitive to discussing it. Out of concern for their child’s well-being, parents may be reluctant to “give it a name” so to speak. They fear their child being “labeled.” Naming it makes it more real, more permanent and more open to negative connotations brought on not necessarily by the disability itself, but by other people’s reactions based on misinformation, misinterpretation and fear.
I understand. I do. As difficult as it can be though, I advocate for personal knowledge and discussion. I think it is only right that the person with a disability has a name for the symptoms they experience. You cannot “hide” the disability from the person experiencing it, no matter what the name. The “label” can answer so many questions about what is going on with the person’s own body and mind.
Knowledge — accurate knowledge — creates ownership. One of the best things I experienced was talking about my disability when I was as young as 8 years old. I stood in front of other 8-year-olds and said I was born with things like “Goldenhar syndrome” and “Hydrocephalus due to aqueductal stenosis.” Was I a young Einstein? No. Did I actually understand what any of those terms meant with any medical specificity? Not really. But without those words, my teachers could think of me as “lazy” when I didn’t follow directions — when in actuality I didn’t hear them. My peers could think of me as weird and at fault because I didn’t speak like they did or move like them. Why should they include me if I wouldn’t conform?
Talking about it helped give me the words to advocate for myself when it came to my disability needs. I could correct the bullies not by giving them back the hate and fear they were giving me, but by granting them the words to make my disability comprehensible to them and part of their experience. My label also made it possible for me to ask for what I needed to learn or function with my teachers and other adults.
Labels can help people without disabilities as well. We humans by nature categorize as a way to determine how to act. I have a hearing impairment. I often don’t hear people when they are on my right side, as I have unilateral hearing. When strangers don’t know that, they may treat me as negatively as any other person who might “ignore” them, or just walk away insulted. These acts devalue me as a human being. Conversely, if they know I have a hearing impairment, they have a number of constructive options. They can position themselves on my “good side” before they speak to me. They can tap my shoulder to get my attention. These options show me I am respected.
In each of these scenarios, I am labeled. In the first scenario I am labeled “rude” and rejected. Both of us miss out on making a connection. We miss sharing our personalities and strengths because of a lack of knowledge on their part. But that is not their fault. It is mine. Often when I see people turn away from me like that, whether I realize why or not, I end up thinking “their loss” and am offended as well. They blame me for being rude when I wasn’t, and I blame them for acting unfairly even though they do not know about my disability.
In the second scenario, I am labeled “hard of hearing” and accommodated with understanding. We communicate effectively and share a mutual respect based on equity. Once we do that, we can move past my disability and share common interests and individual strengths — and even flaws. The second scenario requires both of us to stretch a little beyond what may commonly be our “comfort zone.” I have to understand that other people may not have the same experiences as I do. With that experience comes specific vocabulary. I have to give them the appropriate words to describe who I really am based on my experiences. They have to accept those words and understand them as a positive experience, potentially altering the world view they may have had before our encounter.
Words are one of our smallest forms of communication. Yet they have a lot of power. Words describe and categorize our world and experience. In and of themselves, words are neutral, objective. However, we have the power to impart meaning on words. We have the power to use our words for good — to unite, to create understanding, to make positive connections. The labels we use as people with disabilities are powerful. Sharing labels, using them with nondisabled people can create connections, understanding and respect. Not using them can create fear, misunderstandings and division.
It is up to each of us — disabled and nondisabled — to choose to use our words to empower or devalue. Which do you choose?
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So, a little background on me. When I was a child I had a lot of mental/emotional challenges, learning challenges, and social challenges. By 13, I was already diagnosed as manic depressive, bipolar, and having gross motor and fine motor disabilities. I didn’t have any friends. There were really no answers for me for a very long time. They finally placed me in an outpatient day treatment program through an alternative school. This is where I finally found people who were more like me. I had a friend who saw through my awkwardness, pain and challenges to create a real friendship. I know this person was the first person to put me on the road to being better.
Over the years, I have worked with many professionals and various spiritual teachers. What has helped me the most though has been finding people to connect to.
There are times when my depression may prevent me from taking action. There are situations where my social anxiety prevents me from pursuing an opportunity. And there are just some habits I cannot develop because of how I function. I used to believe these challenges would prevent me from ever having a happy, successful life. I have also seen many people feel the same way about their challenges. Here’s the solution that worked for me.
I have found through having a large social circle with specific individuals as my friends that my weaknesses do not actually really matter. It started out many years ago, as I mentioned, with my first friend. We found we both loved words, and we used to have competitions to see if we knew the most obscure words. This led to my realizing and recognizing that while many people will attack my weaknesses, there were some who weren’t offended by them. This first person opened me enough to start seeking and finding other people. Because of my social anxiety, it was not an easy process.
Luckily, AOL had just become extremely popular (yes, I am old). The chat rooms provided a forum for me to connect with people through the anonymity of the internet. I typically opened a chat room called “Good Listener.” I started hearing other people’s stories and talking about my own. This sometimes led to me meeting up with other people in person. I really started to find people who were capable of being compassionate with my challenges. While it did not remove my social anxiety, it reduced it enough for me to be able to talk more to people, especially on the phone. This whole process occurred during my late teens and early 20s.
I had just started working as an office temp during these years. I found my personal challenges made it difficult to hold down a traditional job. As a result, I was drawn to studying to become a massage therapist. While the academic portion was a bit of a challenge, I found I was a strong kinesthetic learner, so learning massage was a good fit. While studying for massage, I learned about Reiki. (If you don’t know about Reiki, I highly recommend a little bit of research.) Anyway, as a result of my first Reiki attunement, I started having a number of synchronistic experiences, one of which led me to a spiritual store where I started taking classes with people on divination, meditation, healing and different traditions. Through having my positive experiences with people on AOL, I was able to be open to connecting with some of the people I met through these classes.
The more I connected with people the more I started seeing how unique each and every person is. Over the years since then, I have learned that while I cannot do many things, the one thing I do well is love and appreciate those whom I connect with. I have found since a lot people are not used to gratitude and appreciation, that is often enough for them to want to support me. The important part of this practice is to not rely on just a few people. When someone feels they are the only person, or they are one of the only people to support you, it can become too much.
There are actually people who are afraid of co-dependent relationships. Some are even so afraid that they believe any dependent relationship is automatically a co-dependent relationship. We would not have the word “co-dependent” if being dependent was automatically that. The way I avoid co-dependent relationships is in creating a larger quantity of friends. It is almost like realizing if I needed help carrying 100 pounds of something, I could ask four people to carry 25 pounds or I could ask 25 people to carry 4 pounds. Having the 25 people means no one ends up feeling like I am too much weight. I do not expect or demand that people help me. I request and ask for support but recognize it is not anyone’s obligation.
The other thing I have realized in creating positively dependent relationships is I must accurately assess the skills of the person whom I am asking for help. I used to believe if someone loved me they could help me. At least for me, this is not true. I need people with a certain type of intelligence and/or various skills to support my path. Just because someone loves me does not automatically mean they are skilled in the ways I need. Fortunately, my work has led me to interacting with a wide variety of people.
I wrote this article because I believe it is important to teach people that when they build the right community, even though they experience challenges, their life does not need to be a challenge. I recognize this is only one possible solution, but it is a solution that most people are never educated about.
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If you’re looking for an accurate, informative, compassionate representation of your illness, it’s safe to say you’ll probably have a hard time finding it on TV. Most shows portray illnesses in a sensational, highly dramatized way, picking and choosing certain symptoms or stereotypes to emphasize and ignoring the reality patients face. It can be frustrating to watch as someone who actually lives with the illness because you know viewers are getting an inaccurate look at a conditionthey may not know anything else about — which can make it harder for them to understand and empathize with you.
However, occasionally you come across a TV show that seems to have made an effort to “get it right.” These shows can make viewers with the condition feel validated and actually help start conversations about illnesses that are often misunderstood. So we reviewed seven shows to see how well they portrayed an illness.
Inspired by “Golden Girls” creator Susan Harris, who had chronic fatigue syndrome herself, a two-episode arc called “Sick and Tired” saw Dorothy (Bea Arthur) struggle with a mysterious illness doctors couldn’t figure out. After going to doctors who belittled her symptoms and told her she wasn’t “really” sick, Dorothy finally found a doctor who told her she did have something “real” and that it was called chronic fatigue syndrome.
Of course, Dorothy is depicted as receiving a diagnosis relatively quickly, whereas many people with chronic fatigue syndrome search for months or even years to discover the cause of their symptoms. But the portrayal of Dorothy as being dismissed and mocked for her CFS, and subsequently questioning herself, unfortunately mimics what many patients go through.
“This 1989 episode of ‘The Golden Girls’ is so, so important in 2016,” David Michael Conner wrote on The Huffington Post. “It’s important as a historic record of reality — the reality of a patient who lives with a chronic illness, and the reality of how dismissively she is treated by so many.”
2. “Monsters Inside Me”
Though the title takes a sensationalist view of infectious diseases, “Monsters Inside Me” adopts a documentary approach to a patient’s path from infection to diagnosis. Relying on actor re-enactments and interviews with the patients, families and medical experts, the show recounts each step in a patient’s health journey, depicting how confusing and frustrating that search for a diagnosis can be. Some viewers may (understandably) criticize the show for going after shock value, though it is heartening that the patient’s own perspective is front and center here.
Similar to “Monsters Inside Me,” “Mystery Diagnosis” takes a look at one patient’s journey from the onset of their symptoms to their diagnosis and beyond. The same criticism of the show reaching for drama and shock value could apply here, too. But the documentary style and focus on the patient’s perspective mean that viewers can expect to get a reasonably unbiased and accurate explanation of the illness.
In season one of “The West Wing,” which aired in 2001, President Josiah Bartlett (Martin Sheen) revealed he had been diagnosed with relapsing-remitting multiple sclerosis seven years earlier. Over the course of season one and two, Bartlett told members of his staff, and finally the public, about his diagnosis. Some viewers said the show didn’t go far enough in portraying fatigue and how stress can exacerbate symptoms (especially considering Bartlett holds arguably one of the most stressful and demanding jobs on the planet). And 15 years later, some medical information may no longer be correct.
But The National MS Society, who worked with the show’s writers, praised the portrayal as accurate. Bartlett’s decision to gradually “come out” about his diagnosis may be relatable to others with multiple sclerosis, some of whom said the show made it easier to talk about their condition with others.
Paige (Kerris Dorsey) is diagnosed with type 1 diabetes in season one of “Brothers & Sisters,” after displaying some of the classic symptoms like increased drinking and urination. She’s eventually taken to the hospital where she’s diagnosed, and she and her family are educated about diabetes management. Her diagnosis isn’t mentioned much on the show after that, which viewers could argue shortchanges how much the condition affects everyday life. But there seemed to be an effort to show an accurate representation of the onset and diagnosis.
When Michael J. Fox joined “The Good Wife” in 2010, he worked with the writers to give his character, Louis Canning, a condition that wasn’t explicitly Parkinson’s disease (which he’s lived with since 1991) but caused similar body movements. So Louis was written as having tardive dyskinesia, a side effect of Parkinson’s, and in the courtroom scene above, he explained how the condition causes uncontrollable movements. Most laudable is how the character is played by an actor with the condition himself and how there’s more to Louis than just his condition.
“Whenever a show or any representation of characters with disabilities on television tend to be sentimental, with soft piano music playing in the background, and I wanted to prove that disabled people can be assholes, too,” Fox told The Hollywood Reporter.
“Grey’s Anatomy” has made its fair share of mistakes when it comes to depicting illnesses accurately. But one episode that earned praise was the 2016 episode “Falling Slowly,” which featured a character with Ehlers-Danlos syndrome. Taking inspiration from Olivia Herzoff, a woman with Ehlers-Danlos syndrome, the episode focused on a patient who was experiencing dizziness, joint dislocations, pain, and dehydration. Much like real people withe Ehlers-Danlos syndrome, she is accused of being a drug-seeker when she goes to the ER for an IV and experiences the emotional impact of finally receiving a diagnosis after years of not being believed.
Some unexplained details, such as why exactly the patient needed an IV, may stand out to viewers with EDS. But the Ehlers-Danlos Society praised the show for bringing awareness to the condition, and viewers appreciated how both the physical and emotional impact of the condition was portrayed.
“This episode has brought insurmountable awareness to my condition that I will forever be grateful for,” wrote Mighty contributor Kaitlyn Brennan.
What shows did we miss? Share in the comments below.
An endless array of medical tests, all of which come back “normal” or “inconclusive.”
Carrying armfuls of documentation to every appointment to “prove” you’ve already had the tests done, already had certain conditions ruled out, already tried the standard remedies.
Years’-long searches for a diagnosis, which may or may never come.
Pre-prepared packets of information about your rare illness – assuming you’ve secured a diagnosis – to present to your doctors so they can research what you already know and “get back to you.”
That all-too-familiar fear in your gut as you sit in the waiting area of a new doctor’s office. Will this doctor actually believe you, or will he write you off like the last one? Will this doctor be kind, or will he scoff at you and say “It’s all in your head?” And even if he does believe, will he be able to offer help?
Debts of thousands upon thousands of dollars for drugs and treatments that may or may not help at all.
Seeing dozens of specialists. If you’re lucky, these specialists will try to work together. If not, balancing the different doctors’ orders is entirely up to you.
Sleepless nights from insomnia, pain, panic or some other symptom. But when the morning comes, your situation is no better, because you have to get up and greet a day that could bring any number of terrifying symptoms.
Bottles and bottles of prescription medications, some of them now necessary for survival, some of them just evidence of the rabbit holes you’ve gone down that just lead to dead ends.
Judgment on the faces of strangers (and, more heartbreakingly, sometimes on the faces of family/friends) when you venture from your home. They see your handicap placard, and, unless you’re in a wheelchair or assisted by some other very visible device, they often judge you. Some will even have the audacity to say hurtful things: “You don’t look sick to me.”
Crying, often at what would be considered “inappropriate” times, because you are unable to do what you once could or what others can do with ease.
Seeing a therapist in an attempt to mentally cope with what you are physically experiencing.
Emails or phone calls from well-meaning family and friends, offering diagnoses they saw on television or “cures” they read online. Regardless of the source, your rare disease will definitely be cured if you try this new berry they found in Botswana that only grows in August…
That one guy who insists you “just haven’t been praying hard enough.”
Shying away from pictures that show a time when you felt better.
Avoiding mirrors because you don’t recognize yourself in the reflection they show.
Developing social anxiety because you fear the disappointment of friends and family when you announce you have to cancel. Again.
Rare disease looks like me.
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