shania twain

Shania Twain Opens Up About Grieving a Side Effect of Her Chronic Illness

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Chronic illnesses often come with side effects, some of which can turn simple things you took for granted — like getting a good night’s sleep or remembering which groceries to buy — into painstaking tasks. It’s only natural for a sense of grief and loss to follow — something Shania Twain said she experienced due to her battle with Lyme disease.

In a recent interview with Amazon Music, Twain explained that the reason she hasn’t released an album in 15 years is because she had problems with her vocal cords, which she attributes to Lyme disease. The loss of her voice made her feel as though “a part of [her] had died.”

“I was grieving the loss of my voice. I really believed I would never sing again,” Twain said. “I thought well, I’m a songwriter anyway more than anything else and I was prepared to write songs and accept that I was never going to be the performer of those songs anymore.”

Twain said she had to go back to vocal school and speech therapy to relearn how to sing. “I don’t know, determination kicked in, the more I wrote the more I was singing. So a lot of this time I’ve been away it’s just been working on getting this voice back,” she said. Her new album comes out in September.

Twain contracted Lyme disease in the early 2000s in Virginia, and, in an interview with CBC News last week, said that she actually saw the tick fall off her and soon began experiencing symptoms.

“I was on tour, so I almost fell off the stage every night,” Twain said. “I was very, very dizzy and didn’t know what was going on. It’s just one of those things you don’t suspect.”

Though she was diagnosed quickly, Twain said she didn’t realize her vocal issues were caused by Lyme disease until years later.

“It took all these years to determine that,” Twain said. “Then it was all about, ‘Now what do I do about it? How can I fix it?’ So that took several years, just working out what therapy would work for me, without even knowing how well it would work in the end.”

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How My Lyme Disease Went Undiagnosed for Years Because of My Weight

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“Maybe you need to lose some weight.” I heard that many times before my diagnosis of Lyme disease. Sometimes people would say it with love and compassion and sometimes with scorn. I went to the doctors with pain and inflammation issues that were often attributed to my weight.

Each time I heard that phrase a little part of me shut down. I was a really chubby kid and grew into an obese adult. When you are really heavy it is hard to imagine a path to a healthy weight. In the moment of being called out, it feels like an impossible task.

Over time I began to internalize and accept the idea that somehow I deserved difficulty, fatigue, pain and inflammation problems because I was fat – really fat.

But I didn’t push back, in part because I felt so bad about my body and myself. So I had an infection that went on for years without treatment. I got worse and the pain and inflammation escalated. Sure, some of my symptoms were probably related to excess weight, but all of them? I lost trust in my body and my judgment.

Trust Yourself and Find an Answer

Friends and teachers pushed me to get tests done to find out what was going on. They pointed out to me that I was stuck in a negative feedback loop that was only making things worse. No one deserves the type of pain I was in. There had to be something else working in the background. They pushed me to buck up, take responsibility for my own health and investigate.

So I went back to the doctors and asked for help.

I got caught in the testing problems that many people with Lyme encounter. I tested negative three times with the Elisa assay, before I paid for a more accurate test out of pocket and confirmed Lyme. Subsequent tests also confirmed four co-infections. No wonder getting through the day felt like a siege. My body was under a multipronged attack and battling for its life.

After a hard-fought-for accurate diagnosis, a lot of care and the loss of a lot of weight, I know better. If you are in pain and are told you are getting old or too fat, get another opinion. Sure, be honest with yourself about how you are eating and feeling, but don’t blame everything on excess weight or hitting 50 or, or… Trust yourself and if you believe something is wrong, reach out and get the help you need.

Lyme Healthy Lifestyle Habits Have Double Benefits

Losing and maintaining major weight loss was an incredibly healthy thing for me to do. No doubt it puts less strain on my heart and my joints. Weight loss alone would not help me to recover from all the pathogens that had taken up long-term lease though. I needed serious medical help and self help to fight the infections, reduce inflammation and rebuild my ravaged body.

Building wellness has naturally helped me maintain a much healthier weight. I largely eat to replenish my body with nutrient rich whole foods. Low sugar and low irritants happen to be lower calorie too. Exercise every day moves my lymph and keeps my joints limber. I do this to feel good and support my immune health. Instead of using food to soothe, meditation is my go-to to help me relax and stay positive.

No one says, “Maybe you need to lose some weight” to me anymore. Sure, I could lose a little more, but my priority is eating and living in a way that builds wellness every day. Lyme is a great teacher and I am still learning from it.

I gained key insights from my diagnosis process. Listen to family, trusted friends and teachers when they are trying to help me. Tune into my self talk and address excuses. If I am making excuses for how I feel, it means I am off track. Pay attention – when my body asks for help, respond in a proactive way.

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Thinkstock photo via fraulein_freya.

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To the People Who Give Me Advice on How to Avoid All-Nighters With My Illness

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As I lie here in seething pain at 4:00 in the morning, I can’t help but think of all the “advice” I’ve been given about my illness and how to avoid my all-nighters. I appreciate your well-intentioned words and I mean this in the nicest way possible, but please… shut your mouth.

My issues are something beyond your comprehension and when you offer these quick fixes to a complex problem, you belittle how I’m feeling and minimize my situation. I know you “don’t mean it that way,” but if you tell me to just “lie down and close my eyes” or “stop doing ______ and you’ll fall asleep faster,” I honestly want to smack you.

Here’s my night in a nutshell:

I take all my medicines as intended and lie down in my bed. I crack and twinge as the pains move about my body. I will toss and turn for as long as I can, trying to desperately find the “sweet spot” that hurts the least. Somehow there will always be those areas that will ruin me regardless: currently it’s my right side that is spasmodic below my ribs and both knees which are either throbbing or on fire.

When I’ve exhausted myself physically I move to the couch to attempt a new surface. I will sometimes pass out for a couple hours but otherwise it’s another fruitless attempt. I’ll make a warm cup of tea – but thanks to my memory issues I’ll forget about it until I find the cold mug on the counter around noon. QVC and the Game Show Network have become my best friends.

When I think I can try the bed again I slowly make my way back into the bedroom, trying not to pull anything, and get under the covers. As I lie there, I get the sensation that I can’t breathe. My palpitations begin and it feels as though I’m falling through the mattress. I can’t get a full breath in my lungs and no matter how I’m positioned, I feel like I’m drowning in my sheets. It got so bad that I slept on my floor for three months straight just so I could breathe a bit better.

The sun is now breaking and birds are chirping – a beautiful way to wake up by any standard, except I’m sleep deprived, in a great deal of pain and now I have to fight through another foggy day. I will take naps whenever possible or else I will fall on my face. I’m currently out of work due to Lyme disease which allows me time to nap – but that stops no one from judging me for doing so.

Allow me to say this loud and clear:

You do not have any idea what my life is like. You don’t know my body or my needs. Stop telling me what to do as though the answer is crystal clear because it isn’t. It’s hard enough getting doctors to believe the severity of my disease without having my peers adding to it. I am well aware of my situation and I have tried any and all methods to attempt to help myself through it.

If you must comment on my life, please do so respectfully and with regard to my situation. Offer support and ask if there’s anything you can do to help. If you have a suggestion, do not talk down to me when presenting it and don’t make me feel stupid for not trying your methods. There are certain things I cannot take/try on my protocol and there are others I have tried many times, to no avail.

People with chronic illness do not lose sleep the same way regular people do. Please be patient with us and understand that our road is long and uncharted. This rings especially true to anyone who may share a bed with us. We want to cuddle, etc. just as badly as you do, but when we feel trapped in a sarcophagus of pain all night long the very last thing we want is arms and legs wrapped around us.

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Thinkstock photo via rilueda.

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How Lyme Disease Has Affected My Sex Life

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Being in a partnership while chronically ill is not an easy feat. I am very grateful for my partner and how we have gone through this together as a team. I know so many other patients who lost their relationships shortly after being diagnosed or in the thick of their treatment. The true colors of those we are close to comes out rather vibrant when life gets real and raw and unfortunately, that includes the ones that should be there the most.

Along with that comes the opinions of others and their comments and judgments. Some of my favorites my partner and I have heard over the years are “Does she expect you to just wait around until she gets better?” (and yes, yes I do), “You are so lucky to have someone who stays with you” (luck has nothing to do with it, we work extremely hard to make this work) and, of course, “You will be able to get married and have children one day!” (assuming we want to get married and can have children). It is a difficult subject to talk about.

 

Sex, a very important part of any relationship, is also a part of your life that is affected when you have a chronic illness. My partner and I were unable to have any form of physical contact for about two years when I was bedridden. There was no way it could have happened at all and it wasn’t even a thought that came into my mind for a very long time – 24/7 medical care took over instead. The more I healed, the more the awkward it became to get that spark rekindled. Does that make you feel uncomfortable? Me too!

Personally, my body is not in the best of shape after being in bed for two years. I am now in my 30s and things just do not bounce back like they used to. I take two different thyroid medications and hormonal replacement therapy which makes my head spin around backwards some days. There is just a lot going on, and often sex is the last thing on my own mind. It is hard to set something so crucial on the back burner in order to heal when I know my partner is healthy and willing.

Sex is something we make sure to talk about with each other as openly as possible, but that doesn’t make it easy. We used to avoid the subject like the plague since it would stir up a lot of guilt in me and make him feel like he was pressuring me. The more I began to heal though, the easier it was for each of us to talk about.

After going for so long without sex, it was also difficult for us to pick up where we left off. It is not easy to get back into having an active sex life after you have bathed someone and helped them to the bathroom. It was hard for me to let someone who I look at with so much respect and so much love see me so vulnerable.

It takes time and effort from both of us. I try to not lay around in pajamas all day. Just getting dressed, even if you are just sitting around the house, can make you feel good about yourself, and when you feel good about yourself, it is easier to feel good about someone else. Keeping up with the little things that show you care and appreciate your partner can help keep the romance alive. Throughout treatment we did little things like take a shower together or just spend time on the couch watching a movie.

One of my doctors mentioned in an office visit that many of his women patients have a hard time being intimate not only because of the pain and discomfort, but also because when they do not feel attractive, it also affects their sex lives. Being in a relationship, I can see the truth in this, but for those in the dating world living with chronic illness, this can pose a rather large barrier too. Dating alone can be stressful, so how do you mention that sex is not a possibility at the time when someone you are dating is a healthy active human?

It is complicated to squeeze sex into your schedule when you have to take pills multiple times a day and have to work around your good moments. Sex shouldn’t have to be planned. When you are dealing with an illness or a disability, the world as other people see it is turned upside down for you. The things that come naturally to others that they would never think would become an issue are an issue for us. Sex is one of those things that comes with a condition that you wouldn’t even think would be affected, but it is. Even sick people need love and affection. It should not be ruled out altogether and seen as impossible.

The subject of sex should be something more talked about with illness and not something you feel you can only speak with a therapist about in private or in couples’ counseling. Sex is something none of us should ever feel embarrassed about. Without it, we wouldn’t be here today. That is just a fact.

The phrase “in sickness and health” means something very different now than it used to. When I used to hear wedding vows I would always admire that two people were committing themselves to one another. Now I realize that those are just words. Words are easy to say, but actions speak louder. Life can become crooked and distorted at times and it is important to make the best out of what we have.

Being in a long-term relationship with someone, going through the ups and the downs, it is inevitable that this will affect your sex life. Our emotions and thoughts drastically affect how we feel about ourselves and our partner. That is the beauty of it though. When we go through something challenging together, or enter a new friendship or relationship with someone in a challenging part of their life, this can cut through a major part of the dating experience or erase that wonder from a relationship if someone would be there for you if you needed them to if you became ill. If you can go through health issues, you can go through anything together.

So do what you can for now, and try to let it all happen organically. Sex is just a word for a physical activity between two people, but you can change that definition and stigma and make it what you want it to be. You can change that definition.

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Thinkstock photo via Wavebreakmedia Ltd.

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Why I'm Looking at Healing as a Journey, Not a Destination

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I decided to look at healing from Lyme disease as a journey rather than a destination. There became a point when I realized that obsessing about when I will get better wasn’t helpful.

After being sick for so long and trying many different treatments, it’s easy to get caught up in the one supplement or treatment that might be the “ultimate cure.” I am guilty of this. We might see that one treatment greatly improved someone’s health and feel as if that is the missing puzzle piece. And maybe it is. But oftentimes, we need to accept that healing is a process that takes time. It involves not only physical healing, but mental, emotional and spiritual healing too.

 

It’s tempting to feel frustrated and impatient, wondering when and if we will feel “normal” again. But in the meantime we can think, “What am I learning about myself?” “How am I becoming a better person?” “What is this illness teaching me?” It’s hard to see progress in your health from day to day, but then you look back to a few months ago, or even a few years ago, and realize how much you’ve changed. When I look back to six months ago, I realize I am now a different person.  I have persevered through so much which has made me stronger, wiser and better equipped to handle this disease. I have become more patient, more peaceful, more compassionate and more confident.

People ask me when I will be “better” or “cured.” But chronic illnesses don’t work that way. You could feel “better” one day and feel like death the next day for no apparent reason. I found that taking each day at a time is essential to healing. We can find gratitude in each day, stay strong when we feel our worst and try to laugh every day. We can show up every day as our best self, even if that means lying in bed all day in pain and feeling anxious, angry and irritable. We can focus on self-love, self-care and doing what makes us happy.

And while I am eagerly looking forward to the day when I can do more “normal” things, I choose to learn from the journey and know the person who comes out of it will be a better version of me.

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Thinkstock photo via SrdjanPav.

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8 Things I Want People Who Think I'm 'Exaggerating' My Fatigue to Know

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Many people encounter fatigue from time to time. However, some of us endure fatigue daily that is so powerful and impossible to describe. Fatigue is something that I have grappled with my entire life, due to likely having a case of congenital Lyme disease.

As a child, I remember being too tired to go outside to play and I would complain about having to participate in sports. I preferred to watch television, play video games, and doing other stationary activities. The fatigue that I experienced was such a problem that I became overweight at a young age. I lost the weight over the years and have found ways to power through activities, but the fatigue has become more intense as my battle with Lyme disease has become more intense. People that know me are unaware of the overwhelming fatigue that I face on a daily basis because I have become a master at masking my illness. I am such a phenomenal pretender that people think that I exaggerate my illness while explaining it to them.

I wish that the people who think I am misrepresenting my health were aware of the following:

1. When I woke up this morning, I laid in bed and stared at the ceiling for 20 minutes, unsure if I had enough strength to move.

2. Today, I made myself some lunch and then sat down at the kitchen counter. I then spaced out and realized that I had not eaten my sandwich yet. I don’t know how long I was unknowingly staring at the countertop.

3. I decided I wanted to watch some television. When I became comfortable in my chair, someone asked me a question from the other side of the room. I felt like I could not move my lips to talk or turn my head in their direction. There was a pause before anyone heard my response. When I did respond, all anyone could hear was soft, slurred speech.

4. I needed to go outside to the mailbox to get the mail. During the walk outside, I felt like I could not lift up my legs to walk, as if I had 20 pound weights tied around my ankles. I shuffled my feet to the mailbox instead.

5. I started to dry my hair with the hair dryer. It only took five minutes, but I felt like I could no longer hold my arms above my head by the end.

6. I knocked a cup off the table and tried to bend over to pick it up. When I bent over, I struggled to bring myself up from the ground.

7. As I am writing this article, my arms ache from typing on the computer because my muscles are weaker than what they should be.

8. Lastly, fatigue makes me question what I am capable of. Lyme fatigue should not determine my worth, but sometimes I allow it to.

As I previously explained, Lyme fatigue is intense and I would not wish it on anyone. Nobody should doubt their ability to function every day of their lives. Too many times I can count, I have almost let my fatigue make decisions for me. If a group of friends invites me to go to dinner, my fatigue tells me that I should stay home so I don’t hold the rest of the group back from doing what they want to do. If I want to go on a hike, my fatigue tells me that I shouldn’t because I do not have much strength in my legs. However, I have decided that if it is possible, I should not let my fatigue control my decisions.

If I allow fatigue to dictate my life, I will miss out on amazing opportunities. I would like the people who think I exaggerate my illness to know that. People who are not chronically ill are going to judge those that are despite how they live their lives. I would still be judged if I was too sick to get out of bed. Nobody deserves to have their condition questioned by others. People who struggle from Lyme disease and other chronic illnesses already have enough to cope with. We are worthy of acceptance and understanding.

For those who struggle with fatigue, whether it’s a result of Lyme disease or not, keep fighting and know that there are others out there engaged in a similar battle.

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