Ali Hardy

@alihardy | contributor
Ali is an actor/playwright in NYC where she combines her skills as an artist with her experience as a patient to create theatre that brings the chronic illness experience to the stage. She is an ambassador for Suffering The Silence, the co-founder/co-artistic director of Reckless Theatrics, and writes the blog Chronically Overdramatic.
Ali Hardy
Ali Hardy @alihardy
contributor

Why It's Harmful to Expect Someone to 'Overcome' Their Chronic Illness

People (often able-bodied people) like to talk about “overcoming” chronic illness. Let’s get one thing straight, I didn’t “overcome” anything. I’m still sick and I’m always going to be. Even in times when I seem healthy or some of my illnesses are in remission, I’m still symptomatic and I still have to spend a crap ton of my time maintaining the others and dealing with the aftermath of the bad times. I still have flares. I still have bad days. And being chronically ill is still a huge part of my identity. So no, I didn’t overcome anything. There’s this bullshit idea that when you get sick you need to go away and get better in private, then come back to your life after you’re better. Or if you’re going to get better publicly, you need to be as inspiring and positive as possible. Either way, you’re expected to overcome your illness before you can go back to living your life. But that’s not how being chronically ill works. For so many people, there is no getting “better.” And even for those who do, their life still never goes back to how it was before they were sick. They still spend the rest of their lives managing their illness to prevent it from getting really bad again. But hey, at least it’s happening for a reason, right? At least it’s supposedly making me stronger and apparently I’ll find my purpose from it. After all, I wouldn’t have ended up with this if I wasn’t strong enough to handle it. And besides, who cares how bad it gets because it’ll make a good inspirational story one day. That’s the kind of toxic positivity chronically ill are often told to justify the pain, trauma, gaslighting, neglect, loss, and anything else that comes from dealing with an illness long term. At least it’ll make a good inspirational story, but only if you’re positive about it and can find a way to “overcome it.” This idea that illness is something that needs to be overcome is such a toxic mindset. Expecting someone to overcome their chronic, fluctuating, most likely incurable illness is asking a lot from someone already dealing with a lot. Instead, it is time to make it OK to be sick and living. To be in pain and working. To be in treatment and out there experiencing life. To be managing a fluctuating illness and an acting career. When over 40 percent of the population is living with at least one chronic illness, it’s time to normalize and accommodate it. It’s time to make the world accessible. And it’s especially time to stop calling meeting someone’s access needs giving them “special treatment” when you know if you were in the same boat you’d expect it to be done for you. Please stop expecting people to overcome their illness. Instead, try overcoming the toxic, ableist voice in your head telling you that illness needs to be overcome in the first place.

Community Voices

The Moment I Realized I Wasn't Getting Better

The first Headache specialist I saw was convinced botox was the answer to all of my problems. I had already found a lot of relief for the pain with some of my other treatments with other doctors, but the stroke-like symptoms were still extremely debilitating and she believed it was the final thing I needed to treat the rest of my symptoms and help me get my life back. But before insurance will cover botox you have to prove that you have failed 2 other treatments. So I spent the summer of 2012 taking meds I had already taken before even if I had had bad side effects, like with Topamax.

The first time I took it was back in 2010 when I saw my first neurologist. She thought I had epilepsy and that my hemiplegic migraine attacks were seizures. I was given the generic brand topiramate, which I had a bad reaction to and the side effects looked more like seizures than my actual symptoms. Plus it made me gain a shit ton of weight, made my cognitive symptoms worse, and caused my hair to fall out.So when I found out I had to try it again before getting botox I was pissed. This time I was prescribed Topamax. Within 30 minutes I lost my vision for over 2 hours. We called my doctor who said to keep trying and track my symptoms. After a few days I refused to keep putting myself through this and swore I would never take it again. I don’t think some doctors or insurance companies understand how traumatizing it is to be forced to take meds you know are going to hurt you more just to prove to someone who doesn’t even know you or your pain that the treatment your doctor prescribed is necessary.

After this we kept appealing the denials for botox and eventually got it approved much faster than we thought. Typically there are 31 injections sites in 7 areas along the head and neck. I got way more than 31 and had Botox injected all over my forehead, sides of my head, top and back of my scalp and down my neck and shoulders. She would push two areas and ask which hurt worse, then put multiple injections in both of those areas. She told me if it works I’ll have flu-like symptoms for a few days, then I should start having relief in about 2 weeks.

The first few days my head was so sore it hurt to brush my hair. But then I got my flu-like symptoms. I don’t think I’ve ever been so happy to feel so shitty. I spent the next two weeks while I was waiting for the relief planning my future (stupid, I know), and applying to go to acting school in New York in January.

Then, one day I was sitting on the couch and this pain hit the back, right side of my head, almost as if I had been shot. Immediately the stroke symptoms started, but for the first time ever I was getting them on the right side. The next 3 months were a blur. I started having new symptoms and triggers. I couldn’t be around heavy scents, perfumes, or certain foods while they were being cooked. Sounds and smells never bothered me before and now every little sound triggered me. It was so severe one of my doctors thought I had developed a sensory processing disorder. I had horrible facial pain that I had never had before & ended up being diagnosed with trigeminal neuralgia a few months later. My hemiplegic migraines were now happening on the right side and have been right sided ever since. Even the treatments I had been doing with other doctors weren’t working like they used to. I told my Headache specialist and she told me to give it time to work properly.

I don’t remember much from those 3 months other than horrible pain. I had an appointment with my Headache specialist and told her I felt better now that the botox was wearing off and asked if there was anything else we could try because I didn’t think another round would be good. She agreed and fired me as her patient, saying botox was her specialty and if it didn’t work there was nothing else she could do to help me. I asked her what I was supposed to do, because even though it had worn off everything was different. We were basically back at the beginning. She said she didn’t know but would give me a referral to UWMC’s Headache Center. They unfortunately had a 6-8 month wait list.

I felt like all the progress I had made over the last three years was gone. I had so many new symptoms and triggers, as well as new conditions as a result of the horrible reaction I had to the Botox. This was probably the first time my pain ever made me suicidal. This was also the first time I was hit with the realization that I might never get better and would spend the rest of my life sick and in pain.

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Ali Hardy
Ali Hardy @alihardy
contributor

My Friend Helped Find My Rare Disease Diagnosis, Not My Doctor

I met him in June 2014 when I did a summer acting program in New York City. He was a staff member at the school and the one assigned to audition me for the two year program. A year and a half later, when my symptoms were finally under control enough to begin the program, we met again after orientation. I had been completely upfront with the school from the beginning about my health, because I knew I would need accommodations and had problems getting them in the past. The school hadn’t had a student with my illnesses before, so it was a first for everyone. After speaking with student services I was asked to speak with the Director of Education, who ended up being the same person who had auditioned me a year and a half before. Over the course of my first year in college, we talked a lot. He quickly became a mentor and extremely supportive of my struggle to manage my illnesses. At first, our conversations were the typical “maybe you’re not trying hard enough, I think you should try these super obvious things like juice cleanses and yoga.” But over time he became much more understanding. Not wanting to be seen as difficult, I’d try most of the suggestions, after triple checking to make sure it wouldn’t make things worse. I knew if he was going to believe that I had really tried everything I could, he would need to see these things fail for himself. Plus I appreciated the fact that he was actually taking the time to do the research and educate himself on my illnesses. No one had ever done that before, so I figured I could at least hear what he had to say. As the year went on my health became significantly worse. I had a brief break in symptoms over the summer after trying a new treatment, but by the time classes were starting up again I could no longer afford it. On the first day of classes during my second year, I had back to back cluster headaches and a hemiplegic migraine. I panicked. I told him I was worried about how my health was going to affect my education and wasn’t sure how much more I could take with my health declining as rapidly as it was. A few days later he asked me if I had ever heard of Hughes syndrome (also known as antiphospholipid syndrome or APS) and suggested that I get tested for it. I had an appointment scheduled with a new primary care physician in a few weeks and tried to hold out till then. During that appointment I asked my doctor to be tested for APS, along with Lyme and Von Willebrand disease. She said they were all unnecessary, so I asked if we could just test the APS. She had to Google what is was and told me it was impossible, and I need to stop looking for problems. I kept pushing until finally she agreed to test me. A week later I got my results. I had a low positive. I was in complete shock. I was so used to tests coming back negative that I couldn’t believe one actually came back positive. I asked to be tested again in 12 weeks and the doctor told me it wasn’t necessary and that the results didn’t mean anything. I told her that APS is supposed to be retested six weeks after a positive result to confirm the diagnosis. She tested it, but refused to let me see the results, told me to stop looking for things to be wrong with me and fired me as a patient. So when I went back to Washington to visit my family for the holidays I had my naturopath there retest me again. It was still positive. After seven long years I finally had a diagnosis. I had antiphospholipid syndrome. APS is a rare autoimmune disease that attacks the proteins in the blood causing it to clot too quickly, leading to life-threatening consequences. And since blood is pumped through every organ and system in the body, it can affect every organ and system in the body. For me, most of my symptoms are neurological. In fact, APS is known to not just cause migraines, but hemiplegic migraines specifically. My naturopath was just about as happy as I was with the results. I started seeing her during my first year being sick, so she was glad we finally had an answer and that we had caught it before it was too late. APS has been referred to as the “silent killer” because you can seem totally fine, then develop a blood clot that leads to a stroke, heart attack, DVT, or pulmonary embolism. In fact, most people I have talked to since being diagnosed with the disease have already survived blood clotting events and are worried they might not survive the next. Now I want to be clear, I am so unbelievably grateful for what my friend did. I will never be able to find the words to accurately describe how much this means to me. I spent years of my life searching for answers and am heavily involved in the chronic illness community, and I had never heard of APS before, so I know it took a lot to find it. But what upsets me about the entire situation is he shouldn’t have had to find it. On average an autoimmune disease patient sees about four doctors over two and a half to three years before receiving a diagnosis. And a rare disease patient sees about eight doctors, four primary and four specialists, over a four year period before receiving a diagnosis. And in both cases patients are often misdiagnosed before getting the correct diagnosis. I had seen six primary doctors and over 30 physicians in multiple states over a seven year period before being diagnosed, and I am so lucky that I didn’t have a serious clotting event during that time. Out of the 14 diagnosis I have received, seven came from other patients, were self-diagnosed before being confirmed or something I heard about from a friend. Most of my treatments were ones I looked up or were suggested from someone outside the medical community. And there have been multiple times a treatment has made me worse and it ended up being another patient who explained to me that what my doctor prescribed was not something I could take because of my illness. Med students are taught “when you hear hoofbeats think horses not zebras,” meaning don’t assume the patient’s symptoms are caused by a rare disease, because it’s most likely something more common. But what if they did believe it was rare? Could it lead to more patients receiving the correct diagnosis faster? One in 10 people have a rare disease, so zebras are much more common than most people may think. I’ve spent years of my life being dismissed by people who ended up being wrong. I’d go to appointment after appointment with piles of research and ask if they could just look over it, only to be told to stop searching for things to be wrong with me, labeled as a difficult patient and told that a diagnosis wouldn’t change their course of treatment. I think they tend to forget that health insurance companies won’t cover certain treatments without a proper diagnosis. I don’t know if it’s from a lack of education, lack of research or if simply no one gives a shit, but something needs to change. Too many people are being left undiagnosed for way too long and are having to fight like hell just to get anywhere. I find it hard to believe that out of 36 healthcare providers I had seen, not one thought of starting to test me for autoimmune diseases other than lupus. Or for rare diseases at all. We should be able to trust the medical community with our lives, not have to rely on ourselves and others. And in return, doctors need to not dismiss things we bring up ourselves, or like in my case, things our friends find for us.

Ali Hardy
Ali Hardy @alihardy
contributor

My Chronic Illness Started After I Had Mononucleosis

To the people who are still not self-isolating, you realize you could end up like me, right? I mean, I’m sure you’ve heard all the comments about how social distancing isn’t about you. You’ve probably been told to think about your grandparents and those with compromised immune systems, and how by staying inside you’re saving them. You’ve probably seen them speaking out on social media through hashtags like #WeAreTheVulnerable and #HighRiskCovid19 begging you to stay inside so you don’t infect those of us who can’t fight off the virus. By this point you’ve definitely heard the vulnerable communities talk about how incredibly shitty it feels to hear “it’s not a big deal because only the elderly and sick people will die” over and over like our lives don’t matter. And I’m sure you’re starting to see more and more reports about how young people are not as invincible as they think and make up a huge portion of the people who are in the hospital because of the virus right now. But that’s not what I want to talk to you about. Because I get it. I do, really. Being isolated in my room for over three weeks now, out of work, with no income or idea of when I’ll be working again, having all of my projects postponed and struggling to keep my apartment was definitely not something I was ready for either. But what a lot of young people who think they’ll be fine are forgetting is that the even if you get COVID-19 and survive, the virus could trigger a chronic illness or another health issues that will actually end up making you become one of the vulnerable. If you’re not familiar with my story, when I was 16 I got infectious mononucleosis. I know you’ve heard of mono, that so-called kissing disease that typically comes from the epstien-barr virus (EBV). Lots of people get mono every year. And unfortunately lots of people, myself included, never get better. I didn’t know I had mono right away. It actually took over a year before I knew because this was also the same time that the 2009 H1N1 or swine flu pandemic was happening. In fact, swine flu was my original diagnosis. Part of what led to my misdiagnosis of swine flu was my unusual symptoms: loss of motor skills, confusion, loss of vision and slurred speech just to name a few. It looked like I was having a stroke. My doctors assumed since that pandemic had just started, they had to be symptoms that weren’t well known yet, when in actuality I was having my first hemiplegic migraine. I was quarantined at home for a couple weeks recovering. During this time, my mom was having a routine surgery and coded during it. Her doctors had no idea why, so they assumed she had contracted swine flu from me and had her quarantined in the hospital for a week until her results came back negative. Turns out it was undiagnosed sleep apnea, but that took years to find out. Over the next year I went from being a good student who was super involved in after school clubs, played soccer and did endless hours of community service to having to withdraw from school and failing every class my senior year. I got the opportunity to audition for my dream role, but collapsed on stage inches from the edge and had to give up acting for a few years. Even though we knew I had mono a year after I got sick, it took an additional six years to get my autoimmune disease diagnosis and another year, after watching “Unrest,” before my doctor made the connection. And during all that waiting and testing and time spent isolated, the life I had before didn’t continue because there weren’t all these companies and people determined to make sure it kept going. There wasn’t an option for all of your classes to transition online. If you did try to learn online, it wasn’t with your original classes. You had to drop those and switch to new ones. And online classes for the arts were practically unheard of. Your options were to either wait until you got better or give up and move on. I went to three different high schools my senior year trying to find one that could accommodate me. I had to wait until I was 23 before starting college and still didn’t get to finish. Working from home wasn’t much of an option either. If you were lucky you could find something, but it usually wasn’t a job you enjoyed and often didn’t come with the health insurance you needed. Or they wanted skills and experience that if you were just out of high school, you didn’t have. People weren’t jumping at the chance to help you cover expenses if you lost your income because of illness. And the little help that was there quickly ran out once the realization that this was a long term thing set in. Same with friendships. Unless they were sick too, you couldn’t count on people sticking around and being OK with Zoom hangouts from the couch over face-to-face socializing. Canceling because of illness or because you were trying to prevent catching something was rude and lost you friends. Most people weren’t so understanding. And yeah, maybe that won’t happen to you. We have these accommodations now, so we know they can be done. But we knew they could be done before and they still weren’t, so can you really be sure they’ll still be available if you need them after the pandemic is over? And then there’s all the other complications that come with a chronic illness. It has cost my family and I tens of thousands of dollars in medical bills. I’ve been put on over 40 medications, some of which were immunosuppressents, and I still can’t find one that helps enough to take long term. I’ve had side effects from some of those medications and treatments that I will deal with for the rest of my life. I’ve tried everything from physical therapy and surgery to hypnotherapy and IV ketamine infusions. I was diagnosed with depression, dysthymia, anxiety and began having horrible panic attacks within the first couple of years after I got sick. I’ve even ended up with Medical PTSD after years of mistreatment. And probably the worst part of all this is knowing that as the COVID-19 pandemic gets worse and resources become even more scarce then they are now, having an autoimmune disease, a blood disorder, being on blood thinners, having asthma and a history of being hospitalized for pneumonia puts me in the high risk category. And because of that, my treatment would not be prioritized. It wouldn’t matter how hard I work to manage my illness and stay as healthy as possible. If it came down to it, a doctor might choose to treat a healthier person who had a better chance of survival because they didn’t have underlying medical conditions. A few weeks, or even months of self-isolating, seems like a lot now, believe me, I know. I lived like that for six years. But if doing so prevents you from getting a chronic, incurable, lifelong, possibly rare or life-threatening illness — one that could put you in the high risk category next time there is a pandemic — isn’t it worth it? Concerned about coronavirus? Stay informed with these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness How Can You Tell the Difference Between Anxiety and COVID-19 Symptoms? New Study Suggests Digestive Issues Can Be First Sign of COVID-19 Follow this journey on Chronically Overdramatic.