8 Things You Can Do to Live Well With a Chronic Illness

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Yesterday morning I sat in the infusion center beside a beautiful woman named Christine. We always try to sit together in the infusion room when our dates coincide at the Auckland City Hospital in New Zealand. Every since we first met, we’ve been sitting together as we deal with our chronic illnesses. She has myasthenia gravis, and I have pandysautonomia. She’s great company.

I’m always impressed with Christine. In the face of some truly difficult challenges, she always looks beautiful and is beautiful. She’s carefully groomed, well-dressed and has such a warm and lovely nature. She remembers my kids’ names and cares about what they’re up to. She works part-time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother, grandmother, wife, neighbor, online patient forum member and a friend to many. I honestly can’t comprehend how she manages all of those things every day while living with a severe chronic illness.

Her example makes me want to be better at living with a chronic illness. She’s made me think more about all the things that we can do to manage, cope and transcend chronic illnesses.

Here are the eight things that might help you live well while dealing with a chronic illness:

1. Get creative.

Knit, crochet, write, listen to music, paint, sew, create, play an instrument or do whatever you can do within your ability. Do you remember what it’s like to create something on your own? It’s transformative, distracting and wonderful. Listen to creative people talking about their projects, invite creative people over to teach you techniques, watch YouTube tutorials and take online courses. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival and poetry readings. If you can’t go in person, visit them online.

2. Get involved.

Participate in the initiatives and events organized by patient groups on Facebook and elsewhere. Get to know others. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post and comment in patient forums. Finding your tribe is so good for you.

3. Get ready.

I have spent days that eventually became weeks and years living in old jeans, t-shirts, sweat tops and PJs. If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear like a favorite scarf. Sometimes, getting ready for the day, even if it’s likely to be the same as yesterday, might make you feel a little brighter. I don’t understand the psychology of that, but it just somehow seems to work for me.

4. Get outdoors.

Look at the beauty of the sky, breathe in fresh air and feel the breeze on your cheek. Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back with the blue sky above and white sand below. It’s so therapeutic.

If you need to stay in bed, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this  cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes wished. When you have treasures from outside to hold, it can take your mind out there.

Take a look at Be Couper’s photos on my blog’s “How to Just Be” series. She has generously shared some of her stunning photography for my readers to lose themselves in when nature needs to come to you.

5. Transport yourself.

Reading, listening to audio books and watching television series or movies will take you places. Overcome your reality with a healthy dose of fiction. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection.

6. Laugh.

Laughing can raise your endorphin levels, and happy hormones can’t help but leave you happy! Watch a comedy. Listen to children talk or play games among themselves. Be silly. Nothing makes the kids giggle so much as coming home to find Mommy in an odd wig. Wear silly things if that’s your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. And when you laugh, make it big. Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

7. Give.

A chronic illness can teach us so much. Often we’d rather skip the lesson, but we get it. And consequently, we “get” a lot about life. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer? Find ways to tell people how much you appreciate them. Being generous is one of the ways human beings become happy. If you can’t give of your energy, you can give of your heart.

8. Find your thing.

All of these strategies are things I’ve observed in people I admire with chronic illnesses. Some of them work for me, too. But for me, the greatest tool of all is writing. Writing is my therapy, my release, my way to help and my connection with my community. If you would like to try blogging, too, I recommend it. It can open doors to opportunities you might have never imagined before.

Whatever methods you employ, don’t give up. I believe there are always ways to overcome.

Rachel F. Cox the mighty.1-001

Follow this journey on The Chronic-ills of Rach.

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The Most Ridiculous Things People With Invisible Illness Hear

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When you have an invisible illness, people don’t always know what to say to you. And sometimes what they do say doesn’t help.

The Mighty worked with AutoimmuneMom, an online community providing resources for moms with autoimmune conditions, to find out: What’s the most ridiculous thing someone has said to you? 

We then asked our Mighty Facebook group, What’s one thing you wish people would say to you? We gathered the eye-opening responses in the video below.

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5 Ways to Support a Loved One With a Chronic or Invisible Illness

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For a long time now, I have lived with a chronic and invisible illness called Meniere’s disease.

At this point, I have learned to live with it and on most days, I’m able to manage my symptoms surprisingly well. But there is no cure for my condition; it’s always there, lurking in the shadows, waiting to strike.

And when it does, it can be hard for those closest to me to understand what I’m going through. They try to support me, but despite their best efforts, it’s easy to end up feeling worse. I know it’s not intentional, but the guilt and shame I experience in these moments feels the same.

When you don’t look sick, it can be hard for people to have empathy or even wrap their minds around your situation. But the pain is real. And no one wants to be sick.

We want the same things as everyone else. We want to live life on our own terms. We want to find love and be loved and accepted. We want to be happy. We have dreams and aspirations. But we also have to live with the unfortunate reality of unwanted limitations.

If someone you care about has a chronic or invisible illness, there is a right way and a wrong way to help them. They need you more than ever, but in ways you probably didn’t expect.

The five caregiver commandments:

1. Accept your powerlessness.

Watching a loved one in pain is one of the hardest things in the world. It can feel like being trapped in a nightmare. You want to make them to feel better, but you just can’t.

There are many ways to support your loved one, but you need to understand that you are powerless to make them better. It’s not your job to take away their pain. You need to acknowledge this, and truly accept it, before you will ever be able to make difference for them.

Your love and understanding is the medicine they need.

2. Take time to learn about their illness.

The first step towards understanding is taking the time to learn about their illness. At the very least, learn the basics. What are the symptoms? What are the treatments? It can be helpful to read the experiences of others.

You won’t be able to make them better, but it’s an empowering step. Having an intellectual understanding goes a long way towards providing effective care. It opens the door to empathy.

Talk to your loved one. Ask them about their experience. Ask them questions if you don’t understand, don’t just guess. It may be hard for them to articulate the answers, but be patient. Really try to understand. Try to put yourself in their shoes.

What might your life look like if the same limitations were suddenly placed on you?

The better you can understand their illness, the better off you’ll be. The love and support you give will be authentic in their eyes.

I also recommend reading “The Spoon Theory” by Christine Miserandino at butyoudontlooksick.com. It’s a fantastic article and the most elegant description of what it’s like to live with a chronic illness I have ever come across.

3. Be with them, but give them space when they need it.

One of the best ways to support someone with a chronic illness is to just simply be with them.

Living with a chronic illness can be incredibly lonely. It’s easy to feel disconnected from the world when you are so severely limited. It can be hard to relate to everyone else.

One of the things your loved one needs from you the most is companionship. Never underestimate the power of spending quality time with someone you care about when they are in pain.

Sometimes, just knowing we are not alone in our moment of pain is enough to carry us through.

But the reverse is also true. There will be times when the best thing you can do is to give your loved one space. Getting enough sleep and rest is a critical part of managing a chronic illness. There will be times when your loved one needs you, but there will also be times when they need to be alone.

If they don’t have the energy to spend time with you, never hold it against them. It’s not a reflection of some hidden resentment they harbor. In fact, it’s not personal at all. No one would rather stay home in bed. But when you have a chronic illness, you’re forced to make hard choices, and it’s so much harder when you feel like you’ve let someone down that you care about.

By giving them space, and not taking it personally, you are supporting them more than you can possibly know.

4. Validate their pain.

At the end of the day, what most people with a chronic illness so desperately seek is to be heard, to be understood, to be accepted, but above all else, to be validated.

Your loved one lives in a reality where almost no one truly understands what they’re going through. When they’re in pain, most people won’t believe them or even care enough to try. But you can be the one who understands. You can be the one who believes. You can’t make them feel better, but you can make them feel heard. Show them you know their pain is real.

By far, this is the most powerful way you can give your love and support. When they feel neglected by the world, a compassionate validation can give them the strength they need to persevere. In that moment, it can change everything for them.

5. Don’t get frustrated.

The worst part of a chronic illness is usually not the illness. Everyone gets sick from time to time. It’s the never ending repetitive nature that makes it so hard. We get sick. Then we get sick again.

At times, it will get frustrating, but it’s so important to remain calm. When your loved one is in pain, they will be at the mercy of forces outside of their control. They may be emotionally needy, distant, angry or sad.

Regardless, it’s safe to say that the interaction may not be as rational as you would expect under normal circumstances. And it’s easy to lose your cool when your good intentions are met with a reaction you didn’t expect. Pain can bring out our worst qualities.

But if you can stay calm and keep a cool head, the tension will always pass. You will be supporting them in a way that will make their pain easier to endure. At the very least, it will give them one less thing to worry about.

It can be difficult to support your loved one in this way, but it’s worth the effort.

Conclusion:

When someone you care about becomes chronically ill, it can force a wedge into the relationship. And if you are unprepared, it can push away the person you are trying to support. But you can bridge the gap if you approach it with the right understanding. It can strengthen the bond and offer the opportunity for growth, both together and as individuals.

If you can practice these five principles, you will support your loved one in a way that truly makes a difference. You can be a beacon of hope, shining light into the darkness of their day.

In a world of people who don’t understand, you can be the one who does.

Glenn Schweitzer the-mighty-07082015-002

Follow this journey at Mind Over Meniere’s.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? 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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24 Ways Having a Child With a Chronic Illness Makes You Aware of Your Heart

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They say having a child is like putting your heart on a pair of legs and letting it walk around outside your body. That’s how it is with my son, Joshy, who has a chronic illness.

And as he grows, my heart grows and breaks with everything he goes through. These are the ways having a child with a chronic illness makes you very aware of your own heart.

1. When you see your child lying seriously ill in a hospital bed and he still smiles and says thank you to the nurses for helping him, your heart swells.

2. When you’re at a major hospital that cares for children for a whole state and every second person knows your child by name, your heart breaks a little bit.

3. When your child gets up and takes a step after fighting for his life and being bedridden for months, your heart glows.

4. When someone comments about the lovely and huge collection of teddy bears your child has and each one symbolizes a surgery or life-threatening event, your heart breaks a little bit more.

5. When your child visits other sick children and brings them toys and games to play with, your heart beams.

6. When your child swallows a long row of tablets three times a day — so many you would swear he rattles as he walks — and he doesn’t complain and turns it into a prayer, your heart smiles.

7. When your child’s room looks more like a hospital room than a bedroom, filled with machines and medicines and therapy equipment, charts and calendars and lists all over the walls, your heart squeezes tight.

8. When you watch your child do physical therapy and see him persevere despite the pain in his face, your heart is full of admiration.

9. When you spend hours doing research into diseases, medications, therapies, doctors and services and fight with bureaucracy for just that little bit of extra help with finances or services or medical attention, your heart cries with frustration.

10. When your child lies still and lets you do therapy and procedures to his body meant to help him and yet cause him immeasurable pain, your heart is touched by his strength.

11. When you see a huge plane flying low just ahead of the car and watch as your child peers in the general direction and nods his head and smiles to please you even though he can’t see it at all, your heart cracks some more.

12. When you see the reaction on your child’s face after he hears you whisper “I love you” for the first time after getting his hearing aides, your heart melts.

13. As you sit by your child’s bed every single night of his life and listen to his breathing, ready to help him whenever he stops breathing, and you look at his peaceful face, your heart breaks.

14. When you see your child watch the same DVD over and over again and he knows all the words, even in Arabic, and he interacts and joins in with the show, your heart smiles.

15. When you see other children running around and playing, horse riding, having parties, seeing friends, going to movies, going to school and doing all the things you know your child is missing out on, your heart aches.

16. When you see your child finish a bowl of food and he was strong enough to feed himself, your heart cheers him on.

17. When you see your child go back into surgery for yet another operation and don’t know if you will ever hold him in your arms again, but you sing him to sleep, tell him you love him, kiss his cheek and walk away, your heart breaks into pieces.

18. When it’s Mother’s Day and your child doesn’t know or understand so there are no flowers, no presents and no breakfast in bed, but he’s with you and persevering, your heart is filled with peace.

19. When you sit on the floor of the shower in the middle of the night and cry for your child, muffling your sobs in a towel because of his pain, for it’s never ending, for all he has missed out on and will miss out on, for all the frustration and anger and hopelessness and fear, your heart shatters.

20. When your child curls up with you on the lounge to watch his favorite movie and you feel his head on your shoulder and his breath on your cheek and his warmth in your arms, your heart fills with joy.

21. When the very first thing that always goes into the car is a huge file filled with medical information and history of your child and you have bags for the hospital permanently packed and sitting at the front door ready to go, your heart aches.

22. When you see your child open a parcel or a card or get a surprise visit or Skype from someone reaching out to him, your heart fills with joy for him.

23. When you talk to a specialist and he tells you the disease has spread and there is nothing more that can be done, your heart begins to squeeze so tight you think you will never breathe again.

24. When your child looks you in the eye and tells you “I love you, Mommy,” your heart is so filled with love and thanksgiving that it overflows, filling in all the cracks and pulling all the broken pieces back together.

Yes, having a child with a chronic illness makes you very aware of your heart.

Toni Mitchell the mighty

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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What I Do When People Stare at My Feeding Tube

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For many of us living with a chronic illness, you learn quickly that people stare. And trust me — they stare a lot. They stare at the mall, at school and at church. They stare when I’m wearing a bikini at the beach or at the pool. Heck, people even stare at the lines sticking out of my shirt or when my feeding tube pump beeps.

I don’t mind the stares at all, but sometimes it’s hard to tell if someone’s being mean or if they’re just curious. While I find most people are just curious, that doesn’t make it any less annoying. Even though they’re curious, they’re still afraid to ask.

And if they really cared, they’d ask.

Of course I’ve dealt with some rude people, or people who don’t understand. Once someone asked if my tube was a pair of headphones. Yes, that actually happened. They help me hear my stomach juices, obviously. (You can actually plug headphones into your feeding tube, I’ve tried.)

I’ve also noticed that kids stare less than adults. Kids take one look, ignore it or ask about it, and then move on. Many adults, on the other hand, look sad or disgusted. I could probably teach those people a thing or two about acceptance — it’s so twisted they’re appalled by anything different.

Other people in my situation tell me they’re embarrassed to show their tubes. They’re scared they’ll be judged and don’t want to draw attention to themselves. They don’t want people to know that tubes keep them alive. My personal motto: Never be ashamed of something keeping you alive! That’s what I’ve stuck with, and it helps me talk openly about my illness.

Being the person I am, I love raising awareness about my disease. While I don’t want to publicize that I’m sick, when people ask, I tell them. My advice is to keep it simple. They usually just want to know the basics not everyone has the brain of a doctor or a nurse. I explain that because my stomach is broken, I can’t eat like everyone else. The tubes help me eat. Also, while it’s hard for those of us who are sick to talk about our illnesses, we have to remember that other people probably feel as uncomfortable as we do.

Never be ashamed of something keeping you alive. I believe that’s the way God made you, and if it’s fine with Him, then it better be OK with everybody else. I always say: Let people stare, I don’t care! It’s my life, not theirs, and they can row a boat and get over it. (Isn’t that the saying?) If you want to ask questions, just be respectful. Most of us don’t care because it means you want to know more.

And a little medical lesson never hurt anybody.

A version of this post originally appeared on It’s Not as Easy as You Think.  

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6 Phrases People Facing Serious Illnesses Would Rather Hear You Say

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When living with a serious illness, you become accustomed to hearing phrases from the uninformed bystander — or even your own family. While these phrases may come with good intent, many are actually quite distasteful for the circumstances we’re facing. Phrases like “Everything will be OK,” “I know what you’re going through,” and “God only gives us what we can handle,” can be somewhat offensive or even demean what we’re facing. Here’s a compilation of appropriate affirmations someone facing a serious illness would rather hear you say.

1. “I Googled your illness.”

A frequent issue we run into is the lack of understanding surrounding our diseases, even by close family and friends. But simply stating you took the time to research an ailment confirms you truly care about your loved one’s condition. Taking this small glimpse into the symptoms they may be experiencing will help you understand what they endure daily. This easy task will also reveal a person’s likely prognosis, which in turn will help the bystander rule out inappropriate remarks such as, “Get well soon” if in fact the patient will not.

2. “I have no idea what you are going through.”

It’s human nature to attempt to relate to those around you; however, when someone is experiencing a trauma you’ve never encountered, expressing, “I know what you’re going through” is not appropriate. The reality is, you have no idea what it is like to slowly watch your body deteriorate unless you’re personally experiencing it. A person with a serious illness often faces unimaginable pain and mental turmoil as a consequence of his or her disease — this is not something you can understand because you’ve experienced, say, the stomach flu.

3. “Sometimes it does feel like God gives us more than we can handle.”

The truth is, whether you’re religious or not, expressing to someone that their situation will never be more than they can handle is distressing. Illness seizes your life and changes everything you knew about yourself. On a daily basis it can feel as though the world is collapsing around you; it most certainly feels at times like it’s more than we can handle. While it’s a nice sentiment to point out that we’re tenacious individuals who can handle what life throws at us, it’s more comforting to us when you acknowledge the times we feel overwhelmed and lost.

4. “I approve of whatever treatment option you choose for yourself.”

Illness are tough enough without input on how we choose to handle them. While many individuals mean well with their herbal remedies, supplements or special diet plans, we must decide for ourselves how to handle our situations. If we decide to use Western medicine to treat our illness, please respect that choice and recognize that we know our bodies best. Attempting to persuade us that we’ve made a misinformed choice or taken the easy way out doesn’t generate a positive feeling for us. Remember to consider that our illnesses are complex, and while a diet may have worked for your issues, it may not help ours.

5. “I know you look good, but I accept that you’re feeling beyond what I can see.”

The most common phrase I receive is, “But you look so good!” But many of us face what are known as “invisible illnesses.” This means that while we may look healthy on the outside, our bodies are raging war just beneath the surface. Acknowledging that we look good seems like a positive affirmation, but it can also belittle what we’re facing, especially when “You must be feeling better” follows. Disease is like an iceberg; you can truly only see the tip. What’s below the surface is extraordinarily large. Please recognize that while we look like healthy individuals, there may be much hardship beyond what you observe.

6. “I recognize that everything might not turn out OK.”

There’s a significant difference between being pessimistic and accepting the reality of one’s situation. All of us living with an illness have had to accept our prognosis. For me, living in a sugarcoated bliss doesn’t benefit me in the long run. This attitude doesn’t mean we’re pessimistic. It means we’re realistically facing our trials. When someone in our life is unrealistically positive, speaking of cures to disease which have none, it can feel quite degrading. In a way, this frame of mind expresses that our trial is not as serious as we believed, that we’re making up the severity of our situation. Many diseases do lead to death, and while conveying to someone, “Everything will be OK” is a lovely thought, truth is, it might not turn out that way. Please remind yourself to accept the reality of someone’s illness. This affirmation will not only assist that person’s confidence but will also create a more comforting environment of acceptance for the bystanders if things do take a turn for the worst.

This post originally appeared on The Day in the Life of a Tube Fed Wife.

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