Christina Lisk

@christina_lisk | contributor
I have been chronically ill and a writer since childhood. Life with chronic illness gave me the time to develop my literary voice, allowing me to publish from the time I graduated high school. From P.R. guides and museum pieces to blogs and fiction on chronic illness, I consistently share my experiences with the world. In Fall 2019, I contributed disability fiction to an international writers' conference and in spring 2020, I will teach a course on cultural representation in fiction. Outside of my work as a writer, I am an avid disability advocate, having marched in Disability Pride Parades nationwide since 2015. Other interests include singing/songwriting, Beatles history, animal care (cats as a special focus), fashion, reading, and studying foreign languages while living with hearing loss.
Community Voices

Though time #

I am really struggling with my depression and PTSD. I cannot get past the idea that I somehow caused my abusers to abuse me. I feel guilty and I have no self esteem. Flashbacks remind me of the hell I went through several times a day. PTSD makes my depression and anxiety worse. I feel like I am falling deeper into my black hole. Cutting no longer is a release and suicide seems to be the only way to get out of my pain.

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Community Voices

Does this sound like BPD?

<p>Does this sound like <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6700553f33fe98e87d" data-name="BPD" title="BPD" target="_blank">BPD</a>?</p>
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Christina Lisk

Why Hard-of-Hearing People May Speak Loudly

To the Man Who Tried to Shush Me, I don’t know how much you heard and understood when I complained to my partner about you and how you tried to quiet me down. The way you waved your hand and said “talk quieter,” though to me, it sounded as though you said, “trk qrter.” I saw the way your ugly lips moved and your hand gesture, and that was how I knew what you were trying to say. You didn’t give a damn that I was trying to watch my diction, or how often I have to watch my diction to accommodate everyone like you. Projection is how I understand my diction in full instead of slipping back into old habits pre-speech therapy. In crowded restaurants, such as the one we were in, my speech becomes harder to hear even inside my own head. It becomes a strain to “trk qrter,” as hearing people like you demand, yet you never consider how much strain goes into fulfilling your entitled wish. Yes, I say entitled, because of how much we as hard-of-hearing people strain ourselves to accommodate you. We go into speech therapy to become what you consider “well spoken,” lest we risk ridicule and exclusion. Conversations with you involve listening to sentences filled with hole punches, and all the while, every word is dulled with sandpaper. If there’s more noise in the background, it’s like listening to your Swiss cheese sandpaper voice in a fog. To appear more “acceptable” in your view, we inference and scramble for context to clarify words, all while making our speech “acceptable” enough so we’re not called “stupid” or “r*tarded.” Hearing aids cannot solve these problems, as you might think, because inferencing is counted as “hearing” in a hearing test. The list of words used for the test is narrow, and after a lifetime of testing, it’s easy to understand that “sssbll” means “baseball.” Tests of pure tones mean you are searching for the tiniest beep, and are expected to strain in the process. Even the littlest blip counts as “hearing,” no matter how much strain is involved to get it. The test is black and white, where either you hear nothing or you’re “fine.” There is no room for the struggle that comes with Swiss cheese sandpaper in a fog. Even if hearing aids and a test with more shades of gray could fix the problem, the lack of insurance coverage puts new hearing aids out of reach. While my model is functional enough for me to participate in everyday life, it’s 11 years old and heavily outdated. The new ones start at $1500, if someone is lucky, and can easily go up to $3000. Did I mention too that hearing aids aren’t covered by health insurance because they’re considered “elective”? The insurance companies ask, “why can’t you get surgery or a cochlear implant?” I’ve had 10 surgeries to fit into your hearing world, and my loss comes from severe scarring of the eardrum from infections and a cholesteatoma. A cochlear implant won’t help me accommodate you. I thought about telling you all of this in the restaurant, but I was so fuming that I didn’t yet have the words to tell you everything I’ve said now. All I could do what vent my rage with my partner, and not give a damn whether or not you understood what I said. By the time you left, I had enough of straining to hear. That’s why, when you said “fnk u fr lryng ur viz,” I responded with a frustrated face. I hoped you would project for a clearer tone, and I wouldn’t have to pick apart your voice. Such was not the case as your lips moved repeatedly with the same tones, but I was too tired to read them anymore. Tired not just from straining to hear in conversation, but tired from the everyday contradiction. How our speech must be “just right” to fit into your world, and we must fatigue ourselves the moment our compensation becomes your inconvenience. Someday, you will know this world too, as hearing loss is inevitable with age. You will feel the struggle to speak and keep up in conversation. Hearing tests will fail you too, and you will be left either in debt or isolation. What you gave me today will come back in the form of another man trying to shush you, and the forced role of accommodator. It’s a lot easier to tell you over a computer, where I don’t have to strain to hear or worry about audible speech. Should I see you again, I’ll put this letter in your hands, as well as anyone who acts like you. Perhaps then, you will understand, and see how my strain will become yours. With the utmost fatigue, Christina

Clinicians Need to Be Educated About Borderline Personality Disorder

I will never forget that day in school. I was in a class called, “Social and Cultural Foundations.” We were supposed to be exploring our biases. It was a class almost entirely of white people discussing their perceptions about different groups of people. And then the question came up. “What group of people do you have the hardest time working with?” A girl in the back raised her hand. She said “I can’t stand working with people who have borderline personality disorder. They are liars and they are manipulative.” Others began to chime in. The unhealthy cries for help. The self-harm and suicidality. The selfishness. The roller coaster. The devaluation and idolization. Every part of the diagnostic criteria was picked apart and criticized by nearly half the people in the room. My blood boiled. I could hardly breathe. I want to shout out, “Hello, I’m right here. You are talking about me. I am a person, not a list of symptoms. And you haven’t the faintest idea of what I go through on a daily basis to get here, to sit in this class with people like you and be judged because I have some letters that equal a diagnosis that describe my pain.” But, I couldn’t. Because they don’t know. I don’t tell them for many reasons. I feel they may not understand. I am afraid of the stigma and being ostracized. But, most of all, that is a very personal thing to share in a room of 23 counselors-to-be. I’m not that brave. I get it wherever I go. I work in mental health as well, as a case manager at a community mental health center. I connect people with mental illnesses to services — make sure they go to the doctor, see a psychiatrist, have health insurance. I provide emotional support as well. And yes, I have clients that have my diagnosis. Some are easier to work with than others. I am lucky. I actually used to be a client at the community mental health center I currently work at. I did dialectical behavioral therapy (DBT) there for a year and progressed to the point where I could do it privately with a trained therapist. That was three years ago. I was in and out of the psychiatric hospital, self-harming and self-destructive. And now, I work there, helping people who were like me, trying to claw their way out. I’m healthier, but I work hard to be that way. My one complaint is this: the language that we use as mental health professionals has to stop. Between work and school, there are times when I feel sick. I’ll hear, “That person is acting so borderline.” No. That person is experiencing symptoms that are directly related to their diagnosis of borderline personality disorder (BPD). You can’t be borderline. It isn’t a state of being. It’s a description of a series of behaviors. Not a noun, not a verb, an adjective. If we want to fight the stigma, then it has to start from within. When I told a co-worker I had BPD, she said, “You don’t present that way.” No. I don’t. Because I am one person with borderline personality disorder. Just one person. And that other person is also one person with borderline personality disorder. How we present, how we behave, may be similar, but it’s also different. So treat everyone with respect to their face, but also behind their backs. If we want to break this stigma, we need to work at it, too. We need to change our language. We need to find kindness and compassion in our hearts to do so. And we need to stop using the term “borderline” like we do. It’s not nice or fair. You wouldn’t call someone with developmental disabilities the “R” word. You wouldn’t call someone who had difficulty walking a “gimp.” So why it OK to refer to someone with a mental illness by their disorder? Why is it OK to call someone’s behavior “borderline” or “bipolar”? We need person-centered language when it comes to mental health. And if we, as clinical professionals, don’t begin to change the way we talk about people behind closed doors, then how are we supposed to break the stigma? I want you to know recovery is possible, but it’s a process. There are times I leave work and go home and cry. There are days when I’m on cloud nine. Progress isn’t linear. I had a nervous breakdown not even two weeks ago, when I was out of work for a week and trying to stay out of the hospital because something I did went right. That’s correct. The interaction went well and I couldn’t handle it emotionally. It pushed me right over the edge. So for those of you who want to work in this field, for those of you who want to help people like you, know it is possible. I’m living proof. But, do it with a good counselor, psychiatrist and support system. Be honest with your supervisor. And hopefully, the pieces will fall into place like they did for me. You can do it. I have faith in you.

Maria Dillon

Feeling Exhausted After Fighting COVID-19 for Weeks

I have been “COVID-ing” for nearly five weeks, but it feels like it’s been an eternity. I knew it wouldn’t be a good thing for me to catch COVID-19 — I am chronically ill with respiratory disease. Last year, I had a “test run” of what COVID-19 might look like when I got gravely sick with respiratory syncytial virus (RSV) and ended up in the hospital. It took me a good month to recover from my respiratory symptoms, and I experienced soul-destroying post-viral fatigue for nearly four months. It’s fair to say that I wasn’t looking forward to having COVID-19, and I did everything in my power to avoid it. I worked from home, avoided crowds, and wore my mask. Still, COVID-19 did eventually ambush me at home, and the only silver lining was that I caught the Omicron variant when I was fully vaccinated, and I avoided other variants. I am thankful that meant I was able to manage my symptoms at home and avoid a repeat of last year’s hospitalization. Still, this “mild” form of COVID-19 is doing its worst inside of my body. In my first week of symptoms, I developed intense chest and sinus infections and had to increase my medication and take antibiotics. Week two saw the infections simmering down and serious gastrointestinal symptoms ramping up, including a diminished sense of smell and a nasty metallic taste in my mouth. Week three saw me reach the full impact of fatigue, and simple tasks became mammoths. The amount of energy required to even think clearly was exhausting. During week four, I still sounded like I had been gargling on nails and had a lot of pain around my ribs and upper chest. The doctor recommended taking my medication and another round of antibiotics. Unfortunately, though, she had no magic pill for my fatigue. COVID-19 fatigue is an absolute beast, and it is so much more than just being tired. It may feel like an incredible heaviness in body and mind. It can come in the guise of slow, slurred speech, thought processes clunking away at a reduced speed, and emotional sensitivity amped up to the max. Focus may be a struggle as the mind flits and drifts with a will of its own. Motivation and enthusiasm can be sucked into the void of this endless, dark tiredness. Limbs may feel heavy and clumsy, and dexterity can be a thing of the past. To me, this fatigue feels as though on every level — emotional, physical, and spiritual — the essence of who I am is being diluted. While I can still appreciate who I was, I’m struggling to recognize the person fatigue is shaping me into. I think I can distill the impact of this beast called “fatigue,” but it makes me feel so darn sad. In week five of my COVID-19, I have managed the mammoth task of getting ready for work in the morning and driving into the office — rather than working from home in my dressing gown. While my lungs definitely feel better this week, they still ache, and fatigue continues to be the gift that keeps on giving. This “mild” illness has stolen way too much time from me and has ripped away my feelings of resilience. I have been chronically ill my whole life, and I know I can cope with this. I am struggling though, and if anyone else tells me again that my COVID-19 symptoms are “really mild” or that I’m only struggling because of my underlying health conditions, I might just have to sit on the floor and have a cry. I am completely over “COVID-ing” and naps and feeling my head hurt after I perform simple tasks. COVID-19, can we just part as friends now, you nasty, wee, viral overstayer?

We Need to Talk About Disability and the Marriage Penalty

As a gay woman, I grew up believing I would never be able to get married. But in 2015, the Supreme Court of the United States of America made my wildest dream come true — or so I thought. I assumed I was in the clear once same-sex marriage was legal. When I was ready, I would be able to marry the love of my life. I was wrong. It wasn’t until recently that I learned that chronically ill and disabled people do not have the equal right to marry. While it’s perfectly legal, marriage comes at a great cost. That cost is “the marriage penalty.” The Marriage Penalty Most government assistance programs are income-driven and you only qualify if you make below a certain annual income. If you receive Supplemental Security Income (SSI) and Medicare, you’re cut off once you get married. It’s important to note that I am not talking about Social Security Disability Insurance (SSDI) which has a whole different set of rules. After you’re married, your spouse’s income is counted as yours and disqualifies you from assistance. Earned income (any money you make) and unearned income (any money your spouse makes) both factor into what you receive for SSI and your Medicaid eligibility. So, if your spouse works, you become ineligible for assistance. That means no more monthly checks to help you pay for daily necessities, rent, food, etc. and no more insurance through Medicare and Medicaid, even if your spouse doesn’t have insurance. How can the government cut someone off from a program they obviously need and rely on? Marriage or Healthcare: Pick One This financial burden creates an unimaginable amount of stress on a couple. As a disabled person, you must make a choice: be legally married to the love of your life and be straddled with an obscene amount of medical bills forever, or never marry and continue to receive assistance. Most couples don’t have the privilege of making that choice. It’s simply impossible to pay out of pocket what was once covered by SSI, Medicare and/or Medicaid. Unless your spouse is incredibly wealthy and can afford the thousands of dollars each month in related medical bills, losing assistance is crushing. Disabled people are forced to choose between getting care and getting married. It’s demeaning and devalues the love of two people. I haven’t found a way through this twisted bureaucracy, but there are a couple of ways to move forward with your life if you find yourself in this tough situation. Call your representatives! Bring this issue to the forefront in politics. Be an advocate and make your voice heard. Change will only happen if disabled people demand to be treated equally. This may be intimidating or scary to do at first, but lawmakers need to hear your first-hand experience and how the marriage penalty affects you personally. Put a name and face to the issue for them. You never know what kind of ally you can make in the process! Choose to be married in your heart, not in the eyes of the government. This option requires a lot of grieving and acceptance, but if you can get there on an emotional level, it’s the best solution disabled people have as of right now. You can do all the things normal couples do: get engaged, wear a ring, have a ceremony with friends and family, live together and create a life together. You just won’t receive the tax benefits of being a legally married couple. But the trade-off of still receiving the desperately needed assistance is a good one. What I’ve Done Personally, I’ve chosen to do both options. As someone who has a Bachelor’s degree in Political Science, the first option was a no-brainer. I’ve written letters to my representatives and asked for meetings to address this pertinent issue. I bring up the marriage penalty in the support groups I belong to, hoping to spread awareness and shed light on why this conversation needs to be had. The second option of emotional marriage but not legal marriage has been a harder pill to swallow. I feel angry that disabled people not only deal with accessibility issues, but must also face this unfair choice. My girlfriend is stripped of her right to marry and she lives with the hardships of my disability. That makes me feel guilty. I’m also bitter that my life is so much more complicated than my peers. Take Action! But by sharing my story, I hope it inspires others to act. There is strength in numbers. While I still dream about being fully equal in the eyes of the government and society, I will be content with no official papers or documents if it means I still get SSI and Medicare. I don’t need a piece of paper to validate my love, but I will fight for my dream of full equality.

Community Voices

What is the worst thing a doctor has told you is “just anxiety,” only for it to be something else?

<p>What is the worst thing a doctor has told you is “just <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5f00553f33fe98d1b4" data-name="anxiety" title="anxiety" target="_blank">anxiety</a>,” only for it to be something else?</p>
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Community Voices

Hi everyone. My therapist recently gave me a little homework to help me try to re-learn how to play and let my inner child out a little. It’s strange that playing seems like such a simple concept, but it’s actually really difficult. If I sit down with some arts and crafts, I just kind of stare at all the materials because I have no idea what to draw, paint, or make. It’s like I’ve lost any and all creative sense (not that I’m a very artistic person to begin with).

What do you do to cultivate play and creativity and let your inner child out a bit?

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I can’t stop 😭💔

<p>I can’t stop 😭💔</p>
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