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The Hidden Reality of Applying for Disability as Someone With a 'Silent' Illness

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Before I got diagnosed with late stage Lyme disease, whenever I heard of someone having a chronic illness or a major health issue, I thought it was something that could be fixed. I thought that because we have the science and technology to treat a majority of diseases, that if I ever got sick, I could simply go to the doctor and get treatment. I thought if I got into a car accident, I could go to the hospital and get put back together. I thought that if I needed proper health care I could get a job that offered it to me.

I look back at how simple I thought things were and how I assumed they work in my past and it helps me to understand how others look at my illness now and think it is an easy fix. I have to admit, once I got sick, I learned how the health industry really works and it was a bit of a slap in the face. I felt like everything I thought I knew, all of the judgments I had towards the health care system and how everything worked was a mirage. Granted, these are all exaggerations, but if I knew then what I know now, it sure would have helped.

After my diagnosis, I began working with out-of-network doctors. At the time, I was also on unemployment through the state of California because I thought I would be leaving my job temporarily for six months. That break from work began in September of 2013 and I am still unable to work now in July of 2017. Once my unemployment ran out, I applied for long term disability. I was unable to walk when I went into the initial examination and almost passed out in the waiting room, but they denied me.

I then applied for an appeal and hired a lawyer. I worked with the lawyer for over a year waiting for my court date and when the date came, I was too sick to make it to the hearing. I literally had to hold onto my father who went into the court date with me. Then an occupational therapist listed several jobs she thought I could do in my condition. As someone who worked up to three jobs before being diagnosed, this was literally the most degrading moment of my life. I broke down in the hearing and for about a week later. I was too sick to be verbal at the hearing about the seriousness of my illness. All I could do is show up and be judged.

After the second denial and two years of going through this waiting period of paperwork, I was very upset. I felt defeated and like maybe I should try to work, which I couldn’t do. At this time, I couldn’t drive since my driver’s license was taken away due to seizures. I also had a hard time getting in the car to go to doctor’s appointments when someone else was driving. I wrote in an appeal letter and waited again for another 15 to 18 months. Again, I was denied. Altogether I waited for 35 months to be fully denied. Now, all I can do is reapply and go through the same long process. This is also the short version — this experience was complex and I went through a lot of work, spent a lot of time and a lot of money on paperwork to have a good amount of proof to have a good hearing.

 

This is life with a silent illness. This is one of the things people do not see. This is something someone like myself does not like to talk about because it carries dense stigma. It is not as simple as showing up, doing the paperwork and receiving support. Along with the denial for disability, both of my Lyme literate doctors are out-of-network. This means I pay for everything out of pocket. I had to bypass Obamacare and pay for a PPO plan just to make sure my monthly labs are covered to monitor my major organs each month. The plan does not cover my IV treatments so those are out of pocket as well.

These costs and these treatments that are saving my life have caused me to relocate into my parents’ home, sell my car, and give up everything I have materially to save my life. It is an organic cleansing of all the things I thought I needed into the few small things I actually do. All that I lost is such a precious price to pay for my health and my wellness, but it is not easy getting there.

I do not share this experience for pity, I share it because when I was going through this, oftentimes I felt alone. Being literally judged after you vulnerably present yourself and your illness to many people, legally and on paper is not a great feeling. Of course this goes after years of trying to find a diagnosis and being judged by numerous doctors. That is just the beginning of a diagnosis with a disease like Lyme disease. I see the disease and situation like an iceberg. You see Lyme disease as a whole on the surface, but what you do not see lies below the surface. This is where the politics, the judgments, the healthcare industry and everything you give up to get better is hidden. It goes beyond a journey and more into a complete lifestyle change and this lifestyle change will be something that you carry with you for the rest of your life.

I will say that ironically I am grateful for these lessons. Now I see how things really work and how sometimes the way we are told things work is not how they work at all. I now do my homework. These hard lessons, these eye-opening moments have humbled me. Learning how the world works can sometimes feel cruel and personally it made me feel very naive.

Now when I see someone with a disability, I see the whole picture. I see the partner they are sitting with and know that it takes a lot to stay together through something like an illness. I think of their families and how the illness of a loved one can flow over into their lives, too. I see how years of treatment means lots of challenges and setbacks. I see a hero, I see a brave person who hasn’t given up and worked through all of the challenges and setbacks to get closer to the one precious gift that some people have naturally, their health. Never give up, and when faced with a judgment or challenge, put your chin up and keep on going and know that you are never alone.

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Thinkstock photo by feixianhu

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13 Surprising Symptoms of Lyme Disease

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When most people think of Lyme disease, they probably picture a tick bite and the classic bullseye rash (if they’ve heard of Lyme disease at all). But there’s so much more to Lyme disease than that. Not everyone with Lyme disease even gets the bullseye rash, and there’s a huge range of other symptoms that can crop up and continue to affect you long after the bite. In fact, Lyme disease is often called “the great imitator” because its symptoms can mimic so many other diseases.

With Lyme disease expected to become even more common this summer, it’s important for the general and medical communities to be educated about the reality of possible symptoms. So we asked our Mighty community with Lyme disease to share some of the “surprising” symptoms they’ve experienced that others may not know about. Let’s move beyond the stereotypes and show people the other life-altering symptoms of Lyme disease.

Here’s what our community told us:

1. “Severe nausea. I can’t eat for days and then will eat everything in sight once the nausea goes away… making me feel even worse.”

2.Trigeminal neuralgia. Lyme loves to mess with cranial nerves.”

3.Eye pain to the point of not being able to see colors correctly.”

4. “Suddenly having a severe increase in pain and stiffness that leads to a lot of difficulty walking. I could have been fine an hour ago, but then I need to lean on someone. It’s scary.”

5. “Now that I have started Lyme treatment I get localized pain that feels just like a bull ant bite. The pain is horrendous, and the first time it happened I ripped off my clothes because I thought I was being bitten, but when I revealed the area there was no ant, just my muscle violently twitching where the pain was.”

6. “I started to misplace or rearrange words/sounds in several sentences. Even though I knew exactly what I wanted to communicate, I would say it over and over the wrong way.”

7. “I actually feel as though my body is being attacked from the inside. It’s never just one thing going on, and the stress of hurting literally never goes away. Whether it be pulsing sharp pain in my joints, weakness in my legs, cramping in my hands, aching in my head and chest, or any one of the other 20-some symptoms that occur. There are always at least five physical symptoms occurring at any given minute.”

8. “Short term memory loss. ‘Did I just take my meds?’ I seriously can’t remember, I can’t remember 30 seconds ago.”

 

9.Seemingly random joint pain, dizziness, and fatigue.”

10. “There are a lot more physical symptoms of Lyme disease than people think. Joint pain, headaches, fatigue, insomnia, chest pain, heart palpitations, stiffness, Bell’s palsy, and many, many more.”

11. “Inability to eat due to severe metallic taste from medication. Tinnitus for three-plus years [that] still continues on and off. Pronounced veins and varicose veins. Postural orthostatic tachycardia syndrome: feeling faint/fainting or blurred/lost vision when standing up, inability to stand for long periods of time.”

12.Paralysis in my limbs.”

13.Loss of hearing, vision, muscle spasms, memory loss, fatigue, extremely prone to infections, unusual body sensations, to list a few.”


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The Loss That Came With Lyme Disease

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Loss is one of the few words I keep coming back to when I think about my journey with Lyme disease and co-infections. Loss, anger and grief. Three emotions that I have truly experienced in-depth since being diagnosed. These are also three feelings that I never anticipated or expected to sense so strongly.

When I was first diagnosed, I never anticipated that I’d lose as much as I did. I also never expected my journey to be nearly as long as it has been and continues to be. Within the first three months of me being sick, I quickly lost my ability to drive, work, and function as an independent woman in their late 20s. Overnight I became completely dependent on my family to make sure that I got out of bed everyday, ate, took my medication and maintained my household. They constantly made sure that I was well taken care of and that, when I had energy, I was showering on a semi-normal basis. My mom joined me at every doctor’s appointment and advocated for me when I was unable to. At the time, I had begun to experience major cognitive dysfunction. I had memory loss, was unable to read, had trouble with word recall, wasn’t able to form proper sentences and my speech was profoundly affected. In the blink of an eye I was completely reliant on my family to keep me alive day to day.

I naively thought that this was all the loss that I would endure, yet it had only just begun. As I was losing these things one by one, I was also losing almost all of the people I had considered close friends and family. I was quickly accused of making things up, not being there for my friends, being selfish, paranoid and being too reliant on my family. I was asked if I was going to be put on chemo and when I said no, I was quickly dismissed as “not being sick enough.”

My major symptoms began around the time I was in a friend’s wedding, and by the time their first month anniversary rolled around, I had pretty much lost my entire support system. Ironically I was so sick at the time, I didn’t know what to be more upset about, the fact that I had to sell my car, that I wasn’t going back to my beloved job anytime soon, or that I was completely and utterly alone in this battle.

I was ignorant enough to believe that it would stop there. What most people don’t realize is that it doesn’t necessarily end. As time goes on, you still continue to experience loss, but it also starts to manifest into anger and grief. I have experienced countless dark days where I’ve had a complete loss of any hope, and all I want to do is give up. Those days are usually followed by a day of sheer rage or grief. Anger is the one emotion that I haven’t been able to fully set free and accept as it is.

Anger is a brutal emotion to experience, it is misunderstood and an emotion that most find very threatening. If I cried in a corner, I’d probably be more understood than I am now. For a long time I was furious at myself for expecting my friends and family members to remain in contact with me, for expecting them to be there and to at least acknowledge my existence with a simple text. I am learning to let go, but I have resented so many people for doubting me and for (I feel) abandoning me when I needed them most.

On top of that, I am enraged with myself that I am not better. I have done everything my doctors have asked of me, and more. I religiously stuck to my strict medication schedule regardless of how awful it made me feel. I went to my infusion center every week for 16 months straight to take a three-fourths inch needle to the chest so I could treat as aggressively as possible. I have tried alternative treatments and consulted an endless number of doctors. It always makes me even more furious when I look on lovely social media and get that punch to the face that someone is enjoying a vacation that’s on my bucket list. I theoretically just paid for that same vacation, I just didn’t get to go on it, it went straight to my medical expenses.

The gift is that this anger and loss has made me truly understand what suffering is. I now understand suffering and pain in a way that I never thought humanly possible. I value my family and genuine friendships in a way that most never experience. These amazing human beings are my “ride or dies,” and both of us know it. I can’t wait to come out of this on the other side, I have not a shred of doubt in my mind that it will take a lot to stop me when I do. This has been my own personal battle and lonely hell. I can handle being alone, and I am strong enough to deal with and get through the darkest days. I have also finally learned to voice what I’m feeling and have become more transparent.

The article's writer, smiling at the camera.

I have developed a strong, unbreakable support system of friends who are all dealing with these diseases and sharing their stories on Instagram. Thanks to them, they have taught me what true friendship is and I can confidently say that I have gained lifelong friends. I have been able to voice my anger, loss and grieving through this channel, and there is always someone who understands and can relate on level that only someone who has been through this can.

I wouldn’t wish this battle on my worst enemy, and frankly at this moment in time, I don’t believe in enemies. It simply takes too much energy to hate someone, it’s easier to just ignore them and live your life. I will say though, that this journey has given me more gifts and lessons than I am even consciously aware of, and for that, I am eternally grateful.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

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Getting Through the Days When I Can't Deny How Lyme Disease Has Affected My Family

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I would consider myself a positive person. Lyme disease on most days hasn’t changed that for me. My husband is soon to start his third month of treatment for this brutal disease. After $5,200 spent, two doctors visits, and many pills taken, recently he started to see a little improvement. There were about two solid weeks where most days were good days — not great of course, but there were days my husband laughed and woke up with zero brain fog and was able to feel halfway normal for the first time in months — maybe even a year really. I got to see the man I married break out of his shackles that the parasite borrelia burgdorferi have chained on him. It was a great view to see — I think it refilled both of our hope tanks and reminded us what is to come on the other side of this thing.

That is why it was so devastating to see his smiles leave, to see the disease creep back in over night and to awake with the feeling of no progress, brain fog, the same days of going to bed at 7 p.m. and the feeling of being right back at square one. These are the days of treatment that are the hardest for me — the days I can’t deny what this disease has stolen from our family: time, thousands of dollars, happiness, and health. These are the days that I mourn the loss of our previous life. These are the days when I look at my two sleeping babies and weep hoping they don’t remember this part of their childhood, when Daddy was so sick and Mommy was running on empty going to sleep at night thinking they didn’t get the best of us because this disease had stripped us of the ability to be at our best for the time being.

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These are the days when I am unable to think long term, to plan anything, because I’m unsure of what the future brings. These are days when everything feels like unstable ground and I feel like I could crack at any minute. Most of the times when I write for mainly therapeutic reasons. In my words I basically give myself a pep talk, saying, I know things will get better, I know this won’t last forever. However, on days like this, I can’t stomach those words because there is a part of me that questions if those things are really true. My husband is due to up some of his most herxing meds next week. A “Herxheimer reaction” is when your immune system is so busy fighting what is trying to destroy it that it makes your symptoms 10 times worse for the time being, so needless to say things are probably going to get worse before they get better.

I know we will get through it — even on days like today when I question everything, when I cry typing — even on these days, I still know we will get through it, because we have no other choice… because these two people are counting on us.

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My Chronic Illness Doesn't Have to Be the 'Elephant in the Room'

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Some people don’t believe I really have anything wrong with me besides the name of my diagnosis, and I kind of get it. I know I don’t look very sick most of the time. That’s because I don’t like people seeing me when I am sick. People with chronic illnesses usually don’t feel comfortable showing that side if they can help it. But can you blame us? Usually family and friends never quite know how to handle having someone in their life when there is a diagnosis of chronic illness. When someone gets sick, the common response is “get well soon!” but what are they supposed to say when it’s obvious you won’t get better?

Misunderstanding turns into judgement, where I hear things like:

“You were able to go out last weekend so why not tonight?”

“You really aren’t that sick – you have been going to class all week.”

“It’s not just a coincidence you’re sick every time you get stressed.”

Well, I don’t exactly have control over this kind of thing. Sometimes I will try to fight it, or I get so tired of being… sick and tired, that I do things I shouldn’t anyways. Having two beers with a friend will lead to inflammation, causing fevers, pain, and usually asthma. But I’ll go out and have a beer anyways, since I won’t ever get completely back to normal. No amount of bed rest will cure me.

Sometimes being sick the next day is worth it.

You see me on Facebook smiling, going outside or to social events. I am a 21 year old that’s supposed to be partying at bars after all. But I don’t show the temperature fluctuations I get, or the fact that the one picture was all I had energy for and then I went home. Some days I do feel better, but remember feeling better for someone with a chronic illness normally means being able to function temporarily, as it usually doesn’t last very long.

Professors in college have repeatedly questioned my doctor’s notes credibility, besides the fact that it has lettering from a major hospital and my doctors phone number listed on it. With so much contradicting day-to-day, chronic illness can start to seem fake even to the ones having it. I start to wonder if I am really sick, if maybe the medications I am on aren’t really working because it’s “all in my head.” I’ve seen the blood work on paper and done the testing multiple times but even hard physical proof can seem unimportant when so many important people in your life start to question your well-being.

I know most people never bother understanding chronic illness, as they shouldn’t have to. But for the ones that have them, please ask questions if you have any. The more you ask, the less guilt or burden is felt for having the disease. If my health issues are recognized then I don’t feel like I need to hide it as much. Nothing is more exhausting than dealing with symptoms and having to pretend like nothing is wrong. Please acknowledge I have something wrong with my body, and that it is a part of me. Be involved, you can ask what symptoms I’m having today. You can ask what my disease causes or what I can or can’t do. You can ask if I’m OK.

What I have is real. My condition is a chronic illness which has no known proven treatment or cure yet. I am in medical studies, following every research article I find and trying every option the doctors will give me. But it doesn’t have to be the elephant in the room or an embarrassing topic. So please ask me anything you want about it. It would be so nice to know that what I now have is accepted as a part of my life and can be validated by those I care about.

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6 Ways Lyme Disease Has Affected My Inner Social Butterfly

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In my younger years, I loved parties, loved going out with friends, and I always had to have something planned for Friday and Saturday. How that shifted when I had kids. For years after they were born, I planned nothing for the early evenings after work. I awakened early, worked a full day, had two small kids to pick up from daycare and was exhausted. I questioned how other working adults had the energy to drive their kids to activities. I did not volunteer to help with the kids’ after-school activities or get involved in community events. By Friday nights, I was completely wiped out. This was my new normal as a young parent; I never intentionally set out to be antisocial.

Once I was diagnosed with chronic Lyme, I withdrew even more from society. Here are six reasons why I’m not the social butterfly I used to be.

1. When the Lyme disease flares up, I can be too tired to walk down and up stairs or walk through several hallways. At times, I’ve been dizzy also. I just do not have the stamina to leave my space, travel, and return. When I’m not feeling well, every action requires a rest period and my body pays for it.

2. Lyme has affected my memory and my vocabulary retrieval. It’s created a brain fog in me that has nothing to do with “age.” (With treatment, some of my memory has returned and some of my brain fog has departed.) It’s not as easy for me to hold a “light” conversation anymore. It’s not as easy for me to hold a serious conversation either.

3. I don’t watch my TV. I don’t get to the movies. I cannot handle much stress or sadness in a show and my attention wanders quickly. Because my family has been through so much turmoil, I only want happy shows with happy endings. I prefer to read, and I read a ton, but I intersperse that with checking everything on my iPhone. So I’m not about to have a conversation with anyone about “Game of Thrones” or the latest Netflix series.

4. Small talk is hideous for me. I have huge issues on my mind – mainly, recovering my children (and me) from chronic disease. It’s difficult for me to listen to people talk about their successful child and complain about academic or athletic issues that I only wished my ill kids struggled with. It’s hard to hear about parents of healthy kids whine about driving a child to zillions of activities when I’m driving my child to zillions of doctor appointments. It’s hard to hear about family vacations when we don’t take vacations anymore. But I never say anything. I do care about others and I want to be a good friend. So I listen. It hurts.

5. I speak Lyme. Yeah, I can’t help it anymore. I gush Lyme and co-infections, International Lyme and Associated Diseases Society (ILADS) and Lyme Disease Challenge. Not everyone wants to hear how Lyme tests are frequently incorrect and how most infectious disease doctors aren’t familiar with chronic Lyme. You don’t get it until you get Lyme yourself. I might be excited about my advocacy work because I am desperate for change, but in truth, everyone has their own pet issue.

6. When I’m not feeling well, I become more introverted. I just want to hole up in my little home, on my big comfy bed and connect via the internet with the friends who are doing the same thing. I’ve even taken online personality tests and they differ based on how well I’m feeling! Flare? Total introvert. Feeling well? The extrovert and introvert sides are balanced.

I do love to see close friends. These are the people who innately understand me, many of whom also speak chronic disease, who are warriors and survivors, with whom I’m often quite comfortable. I have friends who are not a part of the Lyme community, who are not struggling, but are excellent listeners. Friends who make me laugh, who care.

I’m not always invited out, but when I am… well, I used to always go. Now… sometimes. If my family is in crisis, I stay closer to home because I can’t treat a cocktail party like a therapy session. I occasionally avoid seeing people who are friends because I don’t want to break down in tears as I try to gloss over how challenging our lives are right now. I find that when I do see people, I ask a lot of questions so that I don’t have to talk as much about myself.

Socializing should not require false smiles and acting ability. If it takes way too much energy, I end up back on my bed. And then I can’t get out and socialize.

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