Pamela Tharpe

@pamelatharpe
Fighting chronic Lyme disease for way more then ten years and this has nearly destroyed me I seen overwhelming dark times so abused by my medical doctors that I continued to run from one to the other one kind of doctor to another kind of doctor after nearly thinking maybe it’s better off i just relieve everyone from our misery and the way I was living was inhuman I felt like one lost dog behind the cages begging for help and to be loved but you know God has other plans for me he has been working behind the scenes and will be showing up and I’ll praise him in the storm until the waters become calm and darkness falls and a new life begins. I am truly blessed that Jesus Christ lives in me . God bless
Alex Pitzer

Lyme Disease: Issue of Ableism for People With Illness, Disability

The other day someone I’ve known for a long time read my blog. I never discussed much about Lyme disease with him, so I wasn’t surprised that he didn’t really know how to respond after reading it. However, what he did say made me think. He told me he thought it was great that I’m able to convey my pain and that it must be cathartic for me. While I have found writing about my experiences helpful recently, I feel he completely missed the point of this blog. Pain Pain is important. Expressing our pain can get people to pay attention, understand and sympathize with other’s experiences. Expressing and understanding someone’s pain is one of most unequivocally human things about us. It can bring us together, but pain can also tear people apart. It is important to understand that people who live with complex conditions, such as Lyme disease, often experience pain in numerous ways. We can experience physical, psychological and emotional pain as a result of symptoms, but it’s much more than that. We can experience pain because of lost friendships, difficulty with work, school, family and more. People often stay silent about their pain and trauma because of the shame surrounding conversations of mental health and pain in general. However, it simply furthers the silencing of people like myself. Therefore, yes, I talk about pain. And yes, it is uncomfortable for me to talk about, but I feel it is too important to ignore. But, it is also more than that. See, when I talk about pain, it isn’t purely about pain. I don’t feel the need or desire to hide anything about my experiences with illness anymore. I prefer to be honest because for years I felt I had to hide my difference, my otherness. I’ve learned to embrace all of who I am and that means my pain too. However, expressing my experiences with pain in this blog is a catalyst for a much bigger discussion: ableism. Pain and Social Movements Pain is imperative to social movements. We organize because of our pain. It is because of pain we become angry. That anger pushes people to protest, which forces people to hear it. Pain is often deeply connected to injustice, and at the same time it can be a catalyst for change. When I talk about my own painful experiences and emotions I do not want to center the conversation around my pain. It is to start a conversation around why people like myself who live with chronic or invisible illnesses or disabilities can end up with so many painful experiences. Too many people are systematically oppressed and can feel worthless, devalued, silenced, invisible or abused by others because we live with chronic or invisible illnesses/disabilities in an ableist society. That is a problem. What Is Ableism? What is ableism? Oxford English Dictionaries defines ableism as discrimination or prejudice against people with disabilities in favor of those considered to be able-bodied. For instance, those who are healthy can have a “normal” life without accommodations because they do not have any physical, emotional, development or psychiatric disabilities are considered able-bodied people. In addition, stopableism.org describes ableism as a “set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.” We live in an ableist society in which able-bodied people are considered the norm, which means that the public and private spheres, education, social work and more are built for able-bodied people while excluding and ignoring those with disabilities. This often results in people with disabilities facing barriers in their public and private lives in many different ways. It is an incredibly complex topic, but the point is we have a problem. Despite the fact that many people have decided to ignore the very difficult and traumatizing history about how we treat people with disabilities in this country, it still is a problem. In the United States during the 1950s, people were still being tortured and forced into having unethical and immoral surgeries performed on them because of a perceived disability or mental illness in psychiatric institutions. The Americans with Disabilities Act wasn’t even passed until 1990, which is less than 30 years ago. While we may want to believe we have moved past living in an ableist world, we have not. Ableism in the United States We live in a world where if you can’t work or go to school, you are seen as “lazy,” “crazy” (ableist language, FYI) or “asking for attention.” We live in a world where everyone assumes everyone is able-bodied – that they are healthy, can hear and see, walk (at all or long distances), drive, work full-time and still exercise, eat well and have energy to socialize, have a family and do a hobby on the side. People assume if you can’t “do it all” then the problem is with you, not the expectations set on individuals. We live in a society where we think if we eat well, exercise and do everything “right” we will be healthy. If not, we believe doctors are all-knowing and will be able to “fix” us easily. If they can’t though, doctors have a habit of blaming the patient. Just like everyone else. We live in a society where children, your peers and their parents will ghost you and your family the second you are sick because illness is seen as a taboo topic in U.S. culture. We live in a society that mocks and ridicules people constantly for not controlling their lives and bodies. For instance, over the years many people, children and adults have bullied me because I couldn’t do the same physical activities they could. We live in a society where the US government may cut off health care for people who have pre-existing conditions. If I didn’t live in Massachusetts, without the ACA I couldn’t be on my parent’s health insurance. My pre-existing conditions would make health insurance hard to find and much costlier. And at the same time, I have to pay thousands of dollars out of pocket for treatments that insurance companies will not cover because the CDC and IDSA ignore the existence of chronic Lyme disease. If I didn’t have parents to help me, I wouldn’t be able to get treatment. None of this is OK or should be acceptable to people. Yet, it happens. Thus, the pain I have felt is not the problem. It is a symptom of a much bigger problem: ableism. So let’s keep talking and shouting and hopefully something will change. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via LanaBrest.

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Misconceptions About Living With a Rare Disease

On World Rare Disease Day, groups and communities representing over 7,000 rare diseases gather together to unify their messages and support one another. With so many conditions, and new ones continuously being discovered, it’s sometimes hard for others to grasp what it really means to live with a rare condition, or care for someone who’s rare. The Mighty teamed up with the National Organization for Rare Disorders (NORD), a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked our communities, “What’s one misconception about living with a rare condition?” Their answers show that indeed, there are many who think it’s a much easier path than it is. The struggle to receive access to treatment and care, as well as a knowledgeable medical team is very real. Here’s what they had to say: “One misconception about rare disease is that people think doctors and researchers are lining up to study you, do research and help you – and that doctors will know what to do with you. Nope, nope, and nope. There are no adult outcomes, longevity, or lifespan knowledge for my children’s disorder. We are literally figuring it out as we go along.” – Lindsey C. “When people say, ‘I hope she gets better or I hope she gets healed.” I know it’s very well-meaning, but when you have a genetic disorder, every cell in your body contains your mutation, so that’s just simply not possible. I just smile now; I’ve stopped trying to explain.” – Kristy L. “Some people think that people living with rare diseases have no value, and that we aren’t worth curing.” – Julianna K. “One misconception is that if I don’t make it to a doctor’s appointment, I’m not really sick. Sometimes the symptoms of my rare disease prevent me from making it to the doctor.” – Heather S. “Treatments are not the equivalent to being cured. It is frankly just treatment. I am still fighting. I am still sick. I will need ongoing treatment forever to live as stable a life as possible.” – Mandy F. “There is a misconception that having a rare disease gets easier the longer you have it. In reality, you get more fatigued and behind with your life.” – Patricia C. “Some believe that those who share the same rare disease can be treated the same, but that isn’t the case. What works for one doesn’t work for everyone.” – Angie G. “People that don’t have to live day-to-day with multiple, rare, chronic and degenerative diseases like I do don’t understand that it’s a full-time job, even though I am unable to work. It’s a constant battle juggling multiple doctor’s appointments and trying to keep my symptoms under control. So unless they’ve never walked in my shoes, they have no place to judge me.” – Amelia C. “It seems to me that folks assume rare diseases are ‘covered’ by insurance like any other condition. They are surprised to discover that the medicines I need — the treatments, even the doctors, are as rare as hens’ teeth and six times as expensive.” – Carolle C. “That we don’t have good days where we can pretend to be like everyone else. Just because we are in pain doesn’t mean we don’t enjoy going out with friends, shopping, or being social.” – AnneMarie G. “That the treatment for a much more common disease could also work on a rare disease, even if they only have one symptom in common, but completely different causes.” – Katherine O. “People think that if I’m smiling and seemingly happy, I’m not in pain. They assume I’m ‘all better.’ When in reality, I’m dying on the inside and just want to go back to bed.” – Ali K. “Some think that I should be better after all the doctor’s visits. It’s not easy to treat something that even your physicians don’t fully understand.” – Mindy A. “It’s a misconception that a diagnosis comes quickly.” – Karen R. “With a rare disease, it’s nearly impossible to get others to understand you’re in pain if you can’t show them.” – Christy H. “We aren’t on some kind of a stay-at-home vacation just because we have a debilitating rare condition.” – Tessie A. “Our society thinks it takes a special kind of person to care for someone with a rare disease or disability. Nope. It just takes a kind of person who displays basic human qualities and has a lot of love and patience.” – Elizabeth B. “You can live a joy filled life with a chronic illness. It doesn’t necessarily mean that you feel good, but that you choose to be joyful.” – Michelle P. “I’ve had people think that changing my food and/or diet will completely ‘cure’ my rare disease, which is not the case.” – Jenn S. “There’s an assumption that all doctors know and learn about rare diseases. This is certainly not true.” – Sandra R. “It’s frustrating when people tell me, ‘But you look great!’ My response? ‘Thanks! You don’t see me on the days I look like my medical record.’” – Dawn D. “People need to understand that we oftentimes don’t outwardly look physically ill. We could be your neighbor, your nurse, your teacher. You walk past lots of rare disease patients every day and have no idea who they are based on appearance alone.” – Kaitti M. “I think a major misconception of rare disease is that a diagnosis is given from birth or sought after. This is not always the case. Some rare disease patients are born in perfect health and live years before they have a ‘trigger’ to their disease. Literally overnight, families will have to live with massive changes. They will now learn to live with severe disability and the medical maze of rare disease.” – Kim S. “Don’t think that we don’t love what we have. Having a rare disease comes with pluses and minuses, but I wouldn’t trade my life if given the choice. So many incredible people have come into my life due to my rare disease. The tough times I endured have made me a better person.” – Kendra G. “A misconception of living with rare disease is that all experiences are the same. Instead, those experiences of people living with rare disease are as diverse as the people who live with even the same rare disease. There may be similarities to symptoms and treatments, but pain, medications, therapies, appointments, lifestyles will differ depending on who is living with the rare disease. We are still a kaleidoscope of our race, nationality, ethnicity, gender, sexuality, age, class and ability. Telling our complete and unique stories is imperative to patient-centered medicine. ” – Rebekah P. Do you live with a rare condition or care for someone who’s rare? What’s one misconception about living with or caring for someone with a rare disease? Let us know in the comments below.

Receiving Help From an Advocate at Cigna With a Rare Disease

In Los Angeles, it used to be that the best employee health benefits came with jobs in “the industry,” which is how fabulous LA people talk about the entertainment industry. And then, one day, Google, Facebook, Yahoo, YouTube, etc. arrived. Now, Silicon Beach is where the benefits rock. The tech vibe has changed the vibe of Los Angeles. Luckily, I married a “tech geek, so I have access to medical care like a Saudi princess. I do not talk about my health plan. I feel ashamed even to write this, as I know so many chronically ill people on disability, relying on hard-working family members, or struggling to get by on their own, not able to get the care that they need. It’s totally unfair. I have been there with no insurance. I have paid exorbitantly for high-deductible insurance I never used just to never have a gap in coverage for my condition that existed before I was born. My jaw-dropping medical coverage did not make it easy to get excellent care for my rare, poorly-understood disease. The system is a mess, but that is another story. Back to my life as an accidental Saudi princess — the Cigna policy I have is the only thing that made it possible for me to try as hard as I could to chase excellent care down. I did with all my might. I try to have instincts like a blood hound and a grip like a pit bull, but that is another story. With my “luxe” medical benefits came another thrill I had never before had: an advocate within Cigna, Allen Gualarga, totally his real name (kidding). I am not sure what his job title was, as we were never formally introduced. He appeared one day, answering my emails. He helped me sort out my insurance questions and use my policy to get the care I wanted from then on. Usually, when I am trying to get anywhere with my medical care, the person on the other end of the line just talks loudly at me, listens to nothing and tries to figure out the least they can do to get rid of me. It is exhausting. Not Allen. It was true love, at least on my chronically ill and disabled end, because he actually made an effort to help me. Allen Gualarga and I never spoke or even Facetimed. Our relationship was purely epistolary, and nary a selfie or even an emoticon was exchanged betwixt us via my Cigna HIPAA secured email account. Yet, I felt very bonded to Allen Gualarga. I was helpless, sick, and in need. He knew an awful lot of personal information about me. He got me answers. He plowed through my policy for me and helped me work it. He would chase down claims that had gotten stuck in the cogs somewhere, fill in the form where I had forgotten. He was my hero. When doctors would grimace over anticipating a fight with Cigna for a preapproval, I would say, “Don’t worry about it. It won’t be a problem. And if it is, I have someone at Cigna who can help.” The doctor would relax, and I could get what I needed from my insurance and the doctor. Allen Gualarga was doing so much for me, I began to jokingly wondered if we were secretly having an affair. I mean, why else would someone do their job so well? Am I that charming electronically? Am I? At some point, it seemed only appropriate to refer to him as “my boyfriend at Cigna” to everyone except him. Staff at doctor’s offices would stifle giggles, not sure if I was making a joke, or if I was actually having an affair. One time, and one time only, Allen Gualarga called a provider I was seeing and spoke to someone there, so he could process my claim. That was the closest he and I ever got. When the staff mentioned it to me, I was like, “What? Allen Gualarga called here? My boyfriend at Cigna called here? Tell me, please, what does he sound like!” When someone else at Cigna would answer one of my emails to Allen Gualarga, my chest would tighten. Did Allen Gualarga get another job? Is he on vacation? Is he ill? I would wonder. I would never ask. I didn’t really want to know. What if he were gone? I couldn’t stand the thought of starting a new relationship. How could I process my grief? Would I have coverage under the Cigna policy for that? He’s not even there for me to ask. But Allen Gualarga would reappear again and again, so I guess he had been just on vacation or out sick. I never asked. I would tell him I missed him and it was nice to be in touch again. He would continue to answer my emails with his usual professionalism and helpfulness. Right up until the end. Our “affair” went on for four years. Then, my husband’s giant tech employer switched to another insurer. I wrote to my boyfriend at Cigna: Dear Allen, the company has switched to Anthem, and I’m still crying about it. Here are my last few claims, my unfinished business with Cigna. I will miss you. Thank you for your kindness and help all of these years. You made a big difference in my life. Is there somewhere I can send you a fruit basket? Allen Gualarga thanked me kindly, said it was not necessary. But he gave me an address and told me to send it care of his manager. Allen, that’s the city you have been in all this time? I never would have guessed! It was hard to know to what to get as a gift for someone I know absolutely nothing about. I thought of something. I wanted him to feel appreciated. I wanted him to remember me. He really had made a big difference in my life. I did not have to fight for anything. I did not have to waste the little brain power I had figuring out my insurance. I did not worry. I could work on getting well. That was a great gift to the life of someone born with an untreatable, severely disabling disease. And that is the story of my boyfriend at Cigna, who will only know when he reads it here that I referred to him as my boyfriend at Cigna. Farewell, Allen Gualarga! If you are ever in Los Angeles, I will buy you a drink. Follow this journey on Less Flexible

Community Voices

My smile Is reserved for you.

<p>My smile Is reserved for you.</p>
39 people are talking about this
Community Voices

Poor health rears it's ugly head! #Depression

<p>Poor health rears it's ugly head! <a class="tm-topic-link mighty-topic" title="Depression" href="/topic/depression/" data-id="5b23ce7600553f33fe991123" data-name="Depression" aria-label="hashtag Depression">#Depression</a> </p>
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Community Voices

Poor health rears it's ugly head! #Depression

<p>Poor health rears it's ugly head! <a class="tm-topic-link mighty-topic" title="Depression" href="/topic/depression/" data-id="5b23ce7600553f33fe991123" data-name="Depression" aria-label="hashtag Depression">#Depression</a> </p>
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going through another emotional rollercoaster #venting

i’ve been experiencing emotional numbness for quite some time now, and i’ve developed a number of habits just having to deal with this. one of which i’m currently going through is a wave of overwhelming emotions.

i usually have many weeks to a month where i am numb to any emotion, and anything that life throws at me i just suck them and keep it all in, it doesn’t affect me mentally and i feel fine. i have energy for acting excited and happy when i don’t usually feel anything and i don’t get as tired from keeping an act. these are what i call my “highs”.

then, once i hit the deadline to suppress everything i get thrown into a spiral of overwhelming emotions. these are what i call my “lows”. i usually spend an hour or more crying my eyes out at night and then by the next few days, i’m back to being numb again. and then the whole cycle repeats.

but now, i feel like it’s worse than usual. i barely have any appetite to eat and i don’t eat as much unless i really starve myself and i would eat a lot. if not, i didn’t eat much these few days. a voice in my head keeps telling me to tell everyone to leave me alone, i even pushed away my family, when they are supposed to be the closest people to me. i just want to be in my room forever, and the thought of going out terrifies me. I’m so scared of the outside and the people. waking up feels like a chore, i recently had to meet up with friends to go for an art event, and i was on the verge of cancelling it but i forced myself to just go. after coming home, my body is dead weight and my emotions get amplified even more…

it feels like there’s always something crushing me on the inside. i usually talk and vent to my best friend whenever i have my lows and it always got me out of my lows. but for some reason, this time it didn’t help at all.

i’m scared, confused, anxious about the future and frustrated at myself. why am i like this? my family and friends don’t deserve to be treated this way. yet, i can’t help but feel whenever i open my mouth, i would say something to hurt them, so i just ignore them, and i feel even more worse after that.

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Community Voices

I have been so fed up this term with starting practicum and still being in grad school and all these microaggressions happening with my supervisor and professors and how much SHAME I've been feeling for the ways in which my body cannot "keep up" or needs accommodations to work around ableist constructs of what it means to "show up" in the role of the therapist. There is nothing wrong with having a disabled body or having certain limitations...there IS something wrong with a field built on helping people, on not supporting access and space for all types of embodied experiences as therapists! We need more disabled therapists...we need more chronically ill therapists...and just because our reliability and consistency shows up differently than an ableist notion of these same constructs does not mean that we are not reliable or consistent or not meant for this work! Thats bs...Im so tired of having to feel like I need to hide parts of myself in order to sit in the "seat" of the therapist...and this also coming from somatic psychology that emphasizes the importance of the body?!...I CANT smh...there is a such need for more disabled therapists, and if that means also continuing to actively challenging the ableism that is drenched in the field of psychotherapy...well Ill keep using my final papers for that lol....I could go on and on and my brain is just spooned out and my own mini flare happening at the same time so I will end here...

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Community Voices

My smile Is reserved for you.

<p>My smile Is reserved for you.</p>
39 people are talking about this
Community Voices

It might be the Lyme

Going though this journey dealing with chronic Lyme disease for over ten years, (I lost count) and all the doors that’s been shut in my face people saying I’m crazy and the pain it was to see everything around me disappeare your finances, because of medical bills and friends and family cause they just didn’t understand the way I can put it my marriage and my home now that it’s been not taken care of not long after becoming Ill I’m journey been hard I seen some dark dark days but though it all and it wasn’t easy I want all to know I became isolated more or less and won’t go there but it’s ok that time I became closer with God and I had always said from the beginning if this is from God I can deal with it , we’ll I delt with it and with his loving mercy he kept allowing me to see the better things I have ahead of me and gave me the strength to make it one more day I’m grateful for this time with God , he showed me the things I didn’t want to see and the things He wanted me to see , I’m still recovering but I’ll praise him in the storm. Thank you for allowing me to share God bless

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