5 Things I Wish You Knew About Lyme Disease

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If you’ve ever had anyone tell you they have Lyme disease and you’ve answered, “What disease?” you’re not alone. Though this disease is “the most commonly reported vectorborne illness in the United States,” according to the CDC, relatively few people know anything about it or even realize it exists.

On a more personal level, even when you do know about it and in fact have friends who have Lyme disease, it can be difficult to know how to respond or help. I understand that, and to make things easier, here are a few things I wish you knew:

1. Our definition of “OK” might be different from yours.

Most of us people with chronic Lyme disease go into auto-pilot for the question, “How are you feeling?” The answer is, “Fine,” even though we’re far from fine. One reason we might lie is because there is almost never a moment when we feel completely well, but to say so every time gets tiresome, for ourselves and for everyone else. It’s just easier not to go into details, and we know most people don’t want to listen to a list of symptoms anyway.

There’s a commonly held belief that when you’re sick, people will treat you nicely. Often the opposite is true, and we know this. People get uncomfortable. They don’t know how to relate. They get upset and need to be comforted by the sick person. Sometimes they even get nasty and accuse you of being a hypochondriac: You just want attention, you just don’t want to work, you have nothing better to do than lie around. Stop and think about it: If this is the kind of “attention” we get, why would we want it?

The other reason we might say we’re OK is because we’re trying to be OK. For most of us, just being able to survive the day and do the things we have to do without collapsing in the process is a victory. And we actually do tend to have a higher pain tolerance than most people; when it’s a daily reality, you can and do get used to it to some extent.

2. Don’t tell us that if we just think positive, we’ll get better.

People with Lyme disease are well aware of the interplay between physical and emotional well-being. Stress can topple us and land us in bed, even if we’re doing everything “right” regarding our treatment protocol and lifestyle choices. This is because the Lyme bacteria attack the central nervous system and often make a home in the brain and meninges. When we go through stress, our already strained system breaks down.

Things also work the other way around: Not only can emotional stress cause physical collapse, but the infection at work in our nerve centers can cause us to feel negative emotions that are unconnected with our actual emotional experiences. Anyone who has experienced Lyme-induced rage, depression or anxiety attacks knows there is nothing we want more than to be in control of those feelings instead of them controlling us. But unfortunately, there’s not a lot you can do with willpower when your brain won’t cooperate with you because it’s sick.

Nevertheless, it’s not just all in our head. It’s can be everywhere. That pain we feel in our chest and stomach and joints and arms and legs and the soles of our feet and the roots of our hair is real. The infection, the disease, is a real thing, caused by real bacteria, and they will not just all die if we think happy thoughts. Treating for Lyme disease is total war, and if we stop fighting before every single bacterium has been killed, it will come back.

3. If you want to offer solutions, be gentle.

If your tip is basic, chances are we’ve already tried it. For most of us, our goal is to live as normally as possible anyway, so of course we try to eat well, drink plenty, exercise, etc. But it’s not enough just to “lead a healthy lifestyle,” because there is a negative force within us that is destroying every part of us that is keeping us normal.

Maybe you have heard of some effective treatment we haven’t. Do some quick research and try to inform yourself if it would even be viable for Lyme disease. (Lyme is tricky to treat, and a lot of treatments that work for other illnesses might not work for Lyme.) Then, instead of trying to convince us we need it, ask us if we’ve heard of it, and if so, have we tried it and did it work? If we haven’t tried it and you think we should, remember that we are the ones who will have to go through the treatments, and that we may not be enthusiastic to jump right in when so many other attempts have failed. Also, please be sensitive to the fact that we may not be able to afford it.

4. We do want to hang out, we really do.

We know, you invited us and we didn’t come, maybe even after we said we would. That’s because we live in unpredictable bodies that can be fine one moment and debilitated the next. And we feel bad about not coming through; we feel bad because we let you down, and we may even be crying at home because we really wanted to go and now can’t.

Please keep inviting us. Please don’t forget we exist. Please keep us in the loop. And come over! Please come. One of the worst parts of being sick is how lonely it is — the hours you spend staring at the ceiling because you’re too tired to get up, but pain or insomnia is keeping you from the relief of sleep or brain fog won’t let you read.

Remember how in the old days people used to bring flowers and grapes to sick people? That still works! I usually end up eating lots of junk food when I have a bad bout of illness because it’s just too hard to cook — forget about even trying to buy groceries. But even if you don’t bring anything or if you’re just passing by and aren’t sure if you should drop in, do it! You’re who we really want to see. Just having you there means so much.

5. What we need you to do.

We need you to believe us. Lyme disease is notoriously invisible. It might not show up on tests, and most Lyme disease symptoms don’t manifest outwardly. You probably won’t be able to tell from looking at us that we’re sick. But just because you can’t see our pain doesn’t mean it isn’t there. We live in this body, you don’t, so please don’t pretend you know what we feel or don’t feel. Not being believed, especially by the people we’re close to, is by far the hardest part of having this disease.

We need you to be brave with us. Please don’t disappear from our lives because sickness makes you uncomfortable. We have to be brave and fight every day, whether we feel like it or not. You have to make that choice for yourself, and if you stand by us, it will help. Be supportive of our treatment decisions. Just come over and watch a movie with us. Sometimes asking for help or a visit is too hard. We know people have their own busy lives to live, and we don’t want to be a burden. But we really do need and appreciate you.

Stephanie Spicer.3-001

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why Jimmy Kimmel's Lyme Disease Jokes Really 'Ticked' Me Off

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Jimmy Kimmel took it upon himself to help spread the word that New York state officials are warning that Christmas trees may have ticks in them that can spread Lyme disease. He did so by introducing a new holiday character named “Dick the Tick” in this video:

In the clip he jokes that Santa’s bringing Lyme disease to all the kids this year and then goes on to compare the ticks to bloodsucking Christmas ornaments. He then ends with “MERRY TICKMAS.”

Jimmy Kimmel is in a position where he could raise awareness about Lyme but instead chooses to make fun of a cruel and awful disease. Why does society find it acceptable to joke about these things and chronic illness in general? I’m curious if he would make fun of something similar like cancer? Perhaps he’s unaware of how serious Lyme and tick-borne illnesses are. A lot of people think Lyme is simply treated with a couple weeks of antibiotics and then you’re fine. Lyme disease caught early and treated correctly can usually be resolved in several months without problems. What people don’t realize is that misdiagnosed and untreated cases turn into a late-stage, chronic form of the disease.

Jimmy, if you’re reading this, let me inform you what a real “Tickmas” is like. I know from personal experience because after two years of being a medical mystery, misdiagnosis, seeing 14 doctors and having more than 100 blood tests, x-rays, brain MRIs, VNG testing and a liver biopsy, I finally found a Lyme-literate doctor who properly diagnosed me this past July. This Christmas will be by first “Tickmas.” It’s no way to spend a holiday, and I think a lot of other people with Lyme can relate.

1. I can’t buy presents for family and friends

I cannot afford Christmas, or as you call it “Tickmas,” presents this year for my loved ones because Lyme disease is what they call the “rich man’s disease.” Insurance companies don’t recognize or cover chronic Lyme disease. My health insurance only covers about 10 percent of my costs.

2. I can’t eat Christmas cookies or treats.

Lymies are suppose to stay away from sugar because it feeds the spirochetes and suppresses the immune system. This year I’m trading cookies for more than 20 daily supplements, pills and herbs. Some of my fellow warriors are trading cookies for PICC lines.

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3. I can barely put up or decorate a Christmas tree.

What used to be a one-day process to decorate the house took a whole week. For some, decorating will be skipped all together. You see, the fatigue from Lyme is so overwhelming that sometimes I can’t get off the couch or out of bed. Occasionally I have a good day and overexert myself and then end up being down the next few days. I don’t leave the house most weekends because I have to rest and prepare myself for the work week ahead.

4. I can’t travel home for Christmas.

My family lives 1,272 miles away, and I haven’t seen them in 15 months because I’m too sick to travel and I cannot afford it with the overwhelming amount of medical bills. Others like me are in the same scenario, or even worse; their families don’t believe they have Lyme and they’re left to suffer alone.

5. I can help the less fortunate.

The one thing Lyme has not stopped me from doing is helping others. If anything, Lyme has made me more humble and passionate for the care of others and has made me slow down and really count my blessings. The one thing that bums me out, however, is that I can no longer be an organ and tissue donor and I’m not allowed to donate blood.

So Jimmy, please do not wish me a “Merry Tickmas.” There’s no cure for Lyme disease. Lyme has taken so much away from me, and while my life is slowly coming back with treatment, I would not wish this on anyone. I do not know what the future holds for my health, but I do know that for awhile I wasn’t sure if I would be around to see this Christmas. Lyme is a terrible and isolating disease and it’s not something to be taken lightly.

For more information about increasing public awareness of the devastation Lyme causes to the lives of people worldwide, please visit: http://www.ilads.org/.

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What I Didn't Expect to Feel as a Full-Time Caregiver

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When my son was diagnosed with late-stage neurological Lyme disease three years ago, my family decided it would be best if I left my position as a yoga teacher/therapist in private practice and become a full-time caregiver. This was to give him the best quality of life and chance at remission, as there is no cure for late-stage Lyme, and it can be life-threatening if it progresses without appropriate treatment.

As with so many other special needs parents, my life now revolves around medications, all-day appointments at the IV clinic, doctor visits, special diets and the medical equipment that is scattered all over my house. My world has narrowed down to all things Lyme and remission from Lyme. I am not a doctor, but I am fluent in medical-speak and can now hold my own in conversation with doctors.

When I first left my job, and with it my connection to mainstream American life with its emphasis on individualism/achievement/success/competition/getting ahead, I found it metaphorically difficult to breathe. Like being deprived of oxygen, I felt deprived of my identity as a hard-working professional climbing up the ladder in my field. I had trained, interned, taught my heart out and worked my way up to starting my own business over a number of years. I was now, what? What was I in this culture? When you tell people you’re caring full-time for a family member going through a longterm health crisis, they ask what the illness is and then proceed to tell you about their cousin who had that and recovered using this incredible new fad supplement. Then they politely excuse themselves to talk to someone with whom they have something in common.

Although I’ve always been an idealist and believed in serving others, and was a professional caregiver, the thought of giving my hard-earned career up to do unrelenting work with no pay, no benefits and no respect did not sound all that attractive. In my job I took care of others but got paid to do it and got a lot of respect and social currency from my position. When I talked about what I did socially, people always fawned over what I achieved. I never realized how much I depended on that type of status until it was gone.

As all special needs parents likely know, the look you get when you tell people you’re taking care of your family member full-time — that look of pity, while the person says, “Oh I could never do that. You are so brave/patient/loving/compassionate/fill-in-the-blank” — can make any self-respecting, high-achieving person want to vomit.

But after six months of fully immersing myself in the role of caregiving, something surprising happened. I stopped missing the grind, the constant running around and trying to complete all the tasks, the insane multitasking, the lack of sleep, the worry that I was forgetting an appointment/medication/consult, and the addiction to busyness. After I stopped obsessing over all these things and started to relax, that’s when it happened. I was able to pay attention to the world around me and connect with others with a depth, honesty and availability I had never experienced before. I was genuinely interested in the whole of the world around me, and not just the easy and fun parts.

This is not an essay extolling the gifts of illness. Serious, chronic illness sucks, and if my son ever gets into remission, I will be over-the-moon ecstatic, but I will not return to the values and lifestyle I had before, nor will I ever go back to the superficiality with which I used to conduct my life. As a caregiver, I’ve found a way of being that is so much deeper, so much more authentic than what I ever experienced before. 

Being a caregiver has helped me realize the possibility and potential of what I am truly capable of — the width, depth and breadth of myself — and I can finally breathe again.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the People Who Think It’s OK to Touch Me or My Wheelchair Without Asking

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I was faced with one of the most awkward situations I’ve experienced yet, and that’s saying a lot because I always seem to get in the middle of awkward situations. A stranger legitimately went out of his way to touch me on the shoulder as I was trying to drive down the street in my chair. It was raining, and I was trying to go rather quickly to keep my chair from getting wet. I was being careful though, and I was nowhere near close to hitting this guy or even being in his way, and he decides to reach out, touch me on the shoulder and say, “Slow down there, honey.”

Let’s not even talk about how patronizing that is. I’m saying it here, and I’m saying it now: Do not touch me without my permission. Ever. The same thing goes for my chair.

It happens a lot, though — random people thinking they have the right to touch me or my chair without asking or even ever speaking to me. Random strangers will pat me on the head as they walk by. Sometimes it’s a shoulder grab. People seem to have this really annoying habit of touching me. More often than not, the random awkward touching by strangers is also accompanied by a patronizing comment like, “You’re so inspiring,” or “You’re so brave” or my personal favorite, “You’re such a pretty girl.” I do not exist as a symbol of bravery or inspiration, and I certainly don’t exist to be touched without my permission.

How would you like it if people just came up to you and started grabbing at you without ever asking? It’s not flattering. It’s not kind. Honestly, it’s uncomfortable and sometimes even frightening.

A lot of times people know better than to actually touch me, but the same basic courtesy doesn’t extend to my chair. Random strangers in stores and on the Metrorail will use my chair as an armrest or a footrest. People will hang their packages and purses on the back of my chair without asking, as if I’m their own personal coatrack. It’s really annoying, and it also makes me feel subhuman.

You wouldn’t walk up to someone on the street, or even a friend, and put your feet in their lap or hand them your bags without asking first. But people do that to me all the time. They don’t get it. They don’t think it’s a big deal. They forget that my chair is an extension of me. It goes everywhere with me. It’s a part of me. Touching it without my permission is like touching me without my permission. Totally uncool.

The most extreme example I can think of of this situation that I’ve ever been in was in my ninth grade English class. Some boy stuck his fingers in the holes on the back of my wheelchair handles. I was completely unaware of this, although I thought I’d felt someone touching me. I moved forward to get out of my desk at the end of class, and he fell straight out of his seat. His fingers had gotten stuck in the holes. Everybody laughed. I felt so uncomfortable. Not only was I now unwillingly part of this awkward situation that made me the center of attention, but also somebody had been touching me without my permission.

If you see me on the street and you don’t know me, don’t touch me or my chair. If we’re random acquaintances, and you don’t have my permission, don’t touch me or my chair. If we’re friends, and you haven’t asked first, don’t hang your bags on the back of my chair while we’re shopping. I wouldn’t hand you all my bags and expect you to hold them without at least asking you if it was OK first. Please extend me the same courtesy you expect.

In the end, that’s what this all comes down to: courtesy and respect. It blows my mind every day how people do and say things to me that they would never do or say to me if I wasn’t in a wheelchair. If I wasn’t in a wheelchair, random strangers would definitely think twice before patting me on the head or grabbing my shoulder. If I wasn’t in a wheelchair, nobody would ever consider using me as their own personal armrest or coat hanger. If I wasn’t in a wheelchair, these things wouldn’t be a common occurrence. In fact, they would probably never happen to me. Why should the wheelchair change everything?

The next time you’re about to engage in this type of behavior, I encourage you to think, “Would I do this if this person was not a wheelchair user?” If the answer is no, don’t do it. Simple as that.

People want all these rules for how they should interact with wheelchair users, and I’m going to boil it down to one for you right now. If you wouldn’t do it or say it to somebody who’s not a wheelchair user, don’t do it or say it to me.

I’m not your pet you can just touch without asking. I’m not a coat hanger you can hang things on without permission. I am a person, and I deserve to be treated as such.

Follow this journey on Claiming Crip.

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I Made a Video to Show What It’s Like to Have a Brother With Autism

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This is a short video I made about what it’s like for me to have an older brother with autism. I hope you enjoy it and see how blessed I am to have Mitchel as my brother. I love him to death, and I want everyone to see how awesome our bond is.

Below is an edited transcript of Spencer’s video about his relationship with Mitchel.

I’m Spencer Timme, I’m 20 years old and my big brother, Mitchel, has autism.

You know, people always ask me, “Spencer, what is like to have an autistic brother? Is it hard, frustrating, is it different?” I kind of laugh at the question and I’m just, like, “No,” “Not really” and “I don’t know.” I mean, I guess it’s different in that as an older brother, he doesn’t really give me advice on women or he can’t buy me alcohol. I never got beat up by him all throughout my childhood like most brotherly relationships. But we do have our own unique bond.

And like normal siblings, he still definitely acknowledges that he is the big brother. Whether he says, “Spencer is eaten by the shark” or him saying, “Mitchel is a… girl,” he knows how to provoke a response from me. It’s his way of taunting. He pretends to shoot me all the time in the hallway, and he has a vicious bear hug. Like normal siblings, we can get on each other’s nerves, but we can always sort it out by having a wrestling match. He’s usually calling for Mom and Dad within a minute because he has zero resilience to tickling.

Our relationship is special. Not one person understands him the way I do. Our bond is strong. He is the most important person to me. I will always protect him.

He is a special human being, and I don’t mean because he’s autistic. It’s because he’s one of a kind. He never ceases to amaze me. My mom told me when Mitchel was maybe 8 or 9, my parents were told that my brother should stop his therapy because they believed he was never going to improve his speech or his ability to interact. They said he probably reached his max capacity. He proved them wrong. Last summer, he rode a surfboard all by himself, he sang a song at his high school graduation and he’s even a gold medalist in the Special Olympics. When I ask him what day did we do so and so, he’ll give me the exact date, like, October 7, 1999. It’s incredible.

He can draw, cook, type, sing, surf, dance — he can pretty much do it all — but that’s not the main reason I think he’s special. He has this ability to make everyone around him happy, especially me. He makes me a better person.

He has taught me to find the joy in the little things. He has taught me patience, understanding and perspective. Although I play the big brother role by the way I take care of him, I do look up to him. I learn from him every day.

I think about this all the time — I can’t wait for him to be the best man at my wedding. When I have children, their favorite Uncle Mitchel will always be up for watching Disney movies and playing pirates or princesses with them. I’m so blessed to have him in my life.

Here’s to you, Mitchel — thank you for being my brother and my best friend.

So back to the beginning of this story, my answer to what it’s like to have an autistic brother? It’s incredible.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Robin Williams' Wife Breaks Silence on 'Monster' Disease He Was Battling

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Robin Williams’ wife Susan Williams has given her first set of interviews since the beloved actor’s death.

Williams spoke with People magazine and explained that only after her husband’s passing were doctors able to determine what was going on with his body and his brain. “It was not depression that killed Robin,” Williams told People. “Depression was one of let’s call it 50 symptoms and it was a small one.”

Robin Williams was diagnosed with Parkinson’s disease in May 2014, but Susan Williams said it wasn’t until after the coroner’s report came out that doctors determined her husband had Dementia with Lewy bodies (DLB).

DLB is a common neurological condition that is only possible to conclusively diagnose through a postmortem autopsy, according to The Alzheimer’s Association. It’s the third most common form of dementia after Alzheimer’s and vascular dementia, and it may cause hallucinations, impairment of motor function and symptoms similar to Parkinson’s.

Everyone did the very best they could,” Williams told ABC News. “This disease is like a sea monster with 50 tentacles of symptoms that show when they want. It’s chemical warfare in the brain. And we can’t find it until someone dies definitively. There is no cure.”

When asked about her husband’s suicide, Williams said she didn’t “blame him one bit” for taking his life. She added that she was able to see the actor after emergency responders arrived at the couple’s home: “I got to pray with him and I got to tell him, ‘I forgive you 50 billion percent, with all my heart. You’re the bravest man I’ve ever known.’”

Williams hopes her family’s struggles and findings can help others with DLB. “This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it,” she told People. “Because we didn’t know. He didn’t know.”

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