woman sitting in a pew of a church

What I'd Like My Church to Understand About Chronic Illness


Last Sunday, my husband and I went to church. We don’t attend as often as I’d like, but when we do go, I always feel a little self-conscious. I have several invisible illnesses, which means you can’t always tell when I’m not doing well. I started thinking that perhaps I can help others to see that they’re not alone, and maybe I can explain what someone with chronic illness might experience so church and staff members can understand a bit more.

We are those people. We sit in the same place nearly every time we attend church. Our seats are pretty close to an exit – and no, this isn’t so we can make a quick escape. There are times when I have a coughing spell, GI issues or just need to walk around, so I find it easier if we sit near an exit. So please don’t think I’m anal when I make a beeline for “our seats;” their locations have been well thought out.

church music

Our church has a great music ministry. We probably sing for about 10 to 15 minutes every Sunday (no, I’ve never actually timed it). In my past life, BS (before sickness), I really enjoyed this. I still enjoy listening, but I’m not able to participate. I can’t stand in one place for more than five minutes, and some days even that is too much. If I do, blood starts pooling in my feet and legs which causes pain, numbness and also for me to become weak and feel faint due to the blood leaving my brain. So I usually stand for a few minutes, then I sit. I don’t normally take my cane or any other mobility device to church, so most people don’t realize I’m chronically ill. I’m sure a few people have wondered why I don’t participate as I look relatively youngish and healthy. Besides not being able to stand, I’m unable to sing for very long (family members might say I’m unable to sing period.) I must really look rude! I can’t sing because I don’t have the energy or breath to do so. We haven’t quite figured out what the cause of that is, but it’s perhaps a symptom of dysautonomia. So, please understand why I don’t participate in this part of worship. It’s not because I don’t want to, it’s because I’m unable to.

I don’t always close my eyes and bow my head to pray. Some days I’m prone to spells of vertigo. These can be set off by a change of position in my head (usually looking down) and/or by me closing my eyes. So, I usually close my eyes ever so slightly but don’t bow my head during prayer. I know there are probably many people who aren’t ill who don’t bow their head, but most do in church and, in the past, I always did. So please don’t think I’m rude when I don’t appear to be praying because nothing could be further from the truth. I can pray in many ways.

I’m not always real social before or after church. In fact, I may come across as being rude. It sometimes takes me a great deal of effort to get ready for church and I may not have slept well the night before or I may be in a lot of pain. Any number of things can cause me to retreat into myself. I’m normally a pretty social person, but when I’m having a bad day, I tend to steer clear of people. I may not get up and shake hands during greeting time during the service, I may take another exit out of the church to avoid the crowd and I may spend more time than needed in the restroom waiting for the lobby to clear. So please understand: it’s not you, it’s me. It’s my way of coping with all of my many symptoms in the way I know best.

My church attendance may be sporadic. This includes both church services and other church-related groups or activities. You may see me out somewhere on a Saturday night, but come Sunday morning, I’m too sick to go to church. My symptoms can change that fast. I am so grateful that we have an option to watch services live online every Sunday. No, it’s not the same as being there, but it does help me to feel as if I’m still a part of my church. I’ve joined a study group that meets on Friday mornings; I’ve missed several times because of not feeling well. I feel bad about my poor attendance because I worry that other members of the group will think I’m not taking it seriously enough and that I may be taking the spot of someone who could attend more regularly. So please know that I do want to be there and that I need to be a part of a group.

thinking of you

The other day, I got a very nice card in the mail from my church’s women’s group. The card really did cheer me up on what was a very difficult day. So often those of us with chronic illnesses feel left out. There are meal trains, greeting cards and visitation ministries for those who have been hospitalized, had surgery or had a baby, but those of us in this category of always-being-ill aren’t always remembered. Of course, that’s not always the case, but from my reading and conversations with others who are chronically ill, it happens more than it probably should. So please remember those of us with chronic illnesses – a card, a phone call and/or a meal would be so appreciated.

I hope I have helped some of you to feel understood and helped others with understanding. The support and understanding of the church is so important to believers who have a chronic illness. For many of us, it’s the one place where heartache meets hope and where those who worship with us can really make a difference in our lives.

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9 Ways to Keep the Romance Alive When You're Chronically Ill


Hey there, hi there, ho there!

So in my last blog I discussed how sometimes people forget that life for the chronically ill person is far more difficult than a carer’s. I briefly touched on how relationships can dwindle from lovers to a carer-patient relationship when your signifiant other is acting as your carer. So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when chronic illness tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.

1. Kiss.

Kiss gif

When you’ve been with someone a long time, sometimes you genuinely forget to kiss – even if you’re not chronically ill.

“Even just a quick touch of the lips.”

When you’re so busy concentrating on your illness and/or family life, it can be easy to forget to just stop and have a moment together.

2. Do something together at least once a month.

Whether it’s getting in some alcohol-free wine/beer, watching a romantic movie or having dinner together, make the time to spend a couple of hours together not talking about family, the illness, etc. Even a gentle stroll on the beach or through the woods while holding hands can be just enough to keep that flame a-flickering.

lady and the tramp sharing spaghetti 3. Go back to where you first met.

If it’s possible, go back to the place where you first clapped eyes on each other. Try and remember how you felt that day. Recreate your first date. Go to your friend’s house and have them help you get ready.

“Have your partner pick you up or meet you at the place where you had your first dinner/drink together.”

4. Do something nice for each other.

writing a love letter

It doesn’t have to be a birthday or a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find. Make a playlist of all their favorite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.

5. Massages.

Get some nice oils, light some candles and help get those pesky knots out. Please do be careful if you’re massaging someone with a hypermobility syndrome – the last thing you want on your romantic night is to end up in the emergency room!

6. Go on a weekend break/holiday.

If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid). A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with your condition.

vows gif 7. Renew your vows.

You don’t need to recreate your wedding day – unless you want to. You can simply organize to renew your vows with your priest/registrar/humanist. You can do it alone or just invite your close family and friends.

8. I love you.

Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night.

“Let your significant other know that they are loved.”

Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!

9. Sexy time.

sexy time gif If you can do it and want to, go for it. Ninety percent of the time, us spoonies don’t feel sexy or attractive. Sometimes you gotta make yourself look good on the outside to help you feel better on the inside. Help yourself feel sexy by having your hair/makeup done. Have a relaxing bath, shave your legs (if you want), get into a nice nighty or pajamas. Do whatever makes you feel good about yourself. Sometimes after all that effort the last thing you want to do is the horizontal mambo, but if you still have some spoons left and you’re not in too much pain, use that last bit of energy to make lurve. Remember, you don’t necessarily have to “go all the way” – sometimes some heavy petting can be just as nice.

Till next time,

The Zebra Mom

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When Living With Chronic Illness Feels Like Embarking on a Journey




noun: journey; plural noun: journeys
an act of traveling from one place to another.
“She went on a long journey”
synonyms: trip, expedition, excursion, tour, trek, voyage, junket, jaunt

Imagine yourself embarking on an adventure – exploring a vast land with only your mode of transportation and a map. This map can take you anywhere in this land. Whichever way you choose to go will determine what you encounter along the way. Each way you turn will vary in the experiences and people you encounter. Some ways will be similar while others will be substantially different in comparison. Individuals may join you and leave you at various points. Your experience along the paths you choose differ from those of others according to their chosen paths. No adventure will be exactly the same. There are too many variables, leaving each traveler with a unique experience, a unique reality.

Life is a winding road of never-ending experiences and adventures. The synonyms of journey truly fit the uncertainty of life. You never know what life has in store for you, what will come to be with each decision you make in life.

And so it is with chronic illness as it is with life in general. We never know from day to day if our chronic illness will change. If we will experience new symptoms or a reduction in symptoms. We enjoy our plateaus of good health while they last, but these plateaus are never guaranteed. Change is the nature of chronic illness. The doctors we see, the hospitals we attend, the medications we take and the foods we eat all play a role in our life with chronic illness. Each may be a positive or harmful decision for us that has the power to drastically change the development of our chronic illness. Unfortunately, like life, we don’t have the foreseeing power to know what the best decision is for our chronic illness. Instead, we must make the best decision based on the knowledge we have and the circumstance we are faced with at the time. And we hope for the best.

Others disagree with using the word “journey” to describe living with a chronic illness. I, however, embrace this term for my chronic illness life. My life and my chronic illness are not mutually exclusive. For there to be one, there must be the other in my life. It is a fully inclusive circle. This isn’t my preference but it is the way it is and so I will embrace this journey.

Just as we trek through life which is full of surprises, good and bad, so we trek through the journey of chronic illness. I have been overwhelmed by my encounters with others I never would have crossed paths with – physically or virtually – if it hadn’t been for my chronic illness. I have made lifelong friendships with many individuals on their own chronic illness journey. I have held very dear friendships that played important roles at key moments in my life. I have been blessed with some outstanding doctors who help me along my journey. I have also been cursed with some very devastating moments throughout my chronic illness, but with the support of family, friends, and medical providers, I have survived those dark moments and am flourishing along a good path at present.

We all enjoy the smooth, easy paths on our voyage through chronic illness. However, we wouldn’t be able to fully appreciate the beautiful tours of life if it weren’t for the dark, trying passages. When we cross the bridge from the dark into the pristine, we are able to enjoy the ease with a new understanding, a new gratitude. Our eyes are reopened to the greatness of life and so we experience life with renewed senses. Unfortunately, we wouldn’t experience these fulfilling moments to the same degree if we didn’t trek through the difficult paths of life. And so these experiences go hand in hand to make the experience that is life complete.

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Emma Jones Creates 'The Nightstand Collective' to Give an Intimate Look at Chronic Illness


What’s on your nightstand? If you live with a chronic illness, your nightstand might look something like one of the photos featured in Washington-based documentary producer Emma Jones’ “The Nightstand Collective.”

Jones, 42, started the photo-based project as intimate way of looking at chronic illness. “I am very interested in the stories that a collection of objects can tell,” Jones told The Mighty. “What do we reach for to comfort ourselves in times of fear? How do we use those items to make meaning out of our experiences?”

Nightstand with a purple buddha statue, calm drops and a notebook.
Nightstand of someone with Lyme disease.

The idea for “The Nightstand Collective” comes from Jones’ own experience managing multiple chronic illnesses including endometriosis, asthma, autoimmune thyroiditis, depression and anxiety and a symptomatic Tarlov cyst. Part of living with chronic illness, Jones said, is spending lots of time in bed. “My experience of being chronically ill was a slow shrinking of my physical and social world, and subsequently a big expansion in my interior life. My nightstand was a reflection of all the things that I was trying to use to navigate my new reality,” Jones explained.

Emma Jones' nightstand featuring magnesium oil and a tulip lamp.
Emma Jones’ nightstand

Curious about the lives of others living with chronic illness, Jones began “The Nightstand Collective,” reaching out to others with chronic conditions to see if their illnesses are reflected in the items they keep close by. So far, the collective feature 12 nightstands from people with conditions such as Lyme disease, fibromyalgia, rheumatoid arthritis, major depressive disorder and myalgic encephalomyelitis.

A closer look at someone’s nightstand, Jones said, can teach us a lot about the ways chronic illness intersects with someone’s life. “One person submitted her nightstand contents, and on the list was a flashlight that she uses in the middle of the night to take medications so that she doesn’t wake her husband,” Jones explained. “The nightstands become portraits. There is perhaps no other place in the house that is quite as intimate as the nightstand, where only a few treasured people are privy to see.”

Nightstand with a bunch of pill bottles on it.
Nightstand of someone with chronic pain syndrome.

While “The Nightstand Collective” is illustrated through photos, more important than the photos, Jones said, are the stories each nightstand shares. That includes, Jones’ nightstand, the first in her collection, which was shared with hesitation. “When I looked deeper into [my hesitation], I found that I had a lot of shame. For me, my bedroom represents my inability to financially contribute to my family, and that is a really hard truth for me to hold,” she explained.

So far, Jones said she has learned a lot from the project, noting that many people choose to pick items reminiscent of nature and the outdoors to keep by their bedside. “For those people who are confined indoors, having a way to remain in contact with the natural world is an anchor in the uncertain waters of endless treatment cycles,” she explained of the connection.

Nightstand made of suitcases with a bunch of books on top and a spherical alarm clock.
Nightstand of someone with rheumatoid arthritis.

Jones hopes to grow the collection and invites others with chronic conditions to share their nightstands as part of the collective.

“I am at the beginning of this journey, but I know that our illnesses have a story to tell. Our job is to listen.”

To learn more about Jones’ project, check out “The Nightstand Collective.” 




4 Reasons Why I'm Not 'So Lucky' to Live the Chronically Ill Life


Although I believe that these things are said in good nature, people often comment on being envious of different aspects of my new life, and these things, to anyone in my shoes, come off as quite ignorant. These are on the same level of frustration as platitudes for any of us living with a chronic illness. We roll our eyes at them, but really they become quite exasperating after a while. It makes me wonder what people really think I do with my day.

I’m sure we’ve all seen this meme that was really popular a few years ago:


I don’t actually spend my entire day flopped on the couch, eating popcorn and loving a lazy life. Here are a few of the comments I’ve received over the last couple years about what makes people covet that I live the chronically ill life and they do not.

1. “You’re so lucky that you get the perfect mix of calories and vitamins! How convenient!”

I wonder if when people say this they realize why I need an IV bag with all my nutrition in it. I’m missing an entire organ. A very large one at that. I have to now spend 12 hours a night, five nights a week, attached to an IV bag. Yes, I get my vitamins and calories. No, I don’t have to worry about eating the perfect diet. But this really isn’t something to want. It baffles me that people would actually seek these out. It’s really not something to want. Eat right, stay hydrated, and for the love of all that is good and holy, be thankful you have control over your own nutrition!

2. “You’re so lucky that you don’t gain weight!”

I miss working out. I miss being able to eat anything without any significant consequences. I wish I could go back to watching what I ate. You’re right, I don’t gain weight from eating. But the issues I have from eating literally anything and everything are quite brutal. If I don’t want to have those consequences (and I’m hoping that you’re all smart enough to figure out what the consequences of eating food without a small intestine does to your… uh… visits to the lavatory) I have to go without eating anything. Those are my two choices. Chronic diarrhea (there I said it!) or not eating… What would you choose? You may say it’s an easy decision until you’re faced with it in real life.

3. “I wish I could Netflix and Chill all day and not go to work.”

OK, I’ll admit, before I was sick, I would’ve thought this was awesome as well. But it gets boring really quick. For the first 10 months of being sick, I didn’t even have the energy to read. So literally, all I could do was watch TV. My brain was fried. I miss working. I had an amazing community of colleagues where I worked and I really miss those friendships. I now take care of my daughter, which I do love doing! And if asked what I do, I now say I’m a stay-at-home mom, which I wear that title with pride. But I didn’t willingly step down from my position. This decision was forced on me. Hopefully, one day, maybe, I’ll go back to work, but as of right now it’s not even a possibility. So watching my daughter from the couch, while I read or watch Netflix, is my current job. That and being chronically ill; it really is a full-time job. Trust me.

4. “I would love to be able to sleep nine hours a night!”

Yes, I sleep nine hours a night on a good night, but I literally never, ever, ever feel refreshed in the morning. Ever. And it’s also not like I sleep in — I have a 2-year-old and 2-year-olds love getting up at the crack of dawn. I go to bed early because I am so beyond exhausted after supper that I can’t keep even my eyes open. I also have a lot of nights that I don’t sleep through the night. I often have to get up to go to the bathroom, and although I’m not in the bathroom for this long, I’m usually awake for a good hour — hour and a half when I’m up. Once I’m done in the bathroom, I lay in bed and I can’t calm my brain down. I still replay what’s happened in my mind all the time, and for whatever reason, my brain likes to remind me of my illness, my stresses, and all that goes with this new life at 2 a.m.

I get it — in a perfect world, not working and not gaining weight while eating whatever you want yet still not becoming malnourished all while watching Netflix sounds like a super sweet deal. But when that all comes with chronic fatigue, chronic diarrhea, being hooked up to an IV 12 hours a day, getting awful cramping, etc. etc. — it’s really not all it’s cracked up to be. Be thankful for your health, be thankful for your job, and be thankful for those calories you have to count. Because one day, all of that can just be snatched up from under you and you’ll wish you had all of it again.

You envy my life? A day doesn’t go by that I don’t wish that I had yours.

Follow this journey on A Gut Feeling.

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11 Ways to Be Intimate When You Have Chronic Illness and Sex Is Difficult


February is the month of love. Chocolate-covered strawberries, roses, sensual massage oils, lingerie, and champagne — we see reminders of romance and, yes, sex everywhere. When you are dealing with the effects of chronic illness — pain, physical limitations, and fatigue which are not in your control — they can impair your sex-life. Unfortunately, during the Valentine’s season, for people whose ability to have sex has become difficult, the simple objects associated with romance can produce guilt, shame, and sadness. People who struggle with their health may report feelings of inadequacy, fear of their partners leaving them, and feelings that their lives have become all about their illness. Even in the absence of sex, partners spending a little bit of extra time paying mutual attention to their relationship can be very rewarding.

It’s important to remember that sex isn’t the only avenue to intimacy with your partner. You can work together to find other ways to be close. There are the obvious alternative modes of sexual expression; I’ll leave those to your imagination and ability. Let’s discuss the non-sexual, intimate expressions you can share. It might be important to have an up-front conversation, before embarking on this intimacy experience, though, setting expectations and understandings for outcomes. Some people find that as they increase intimacy their desire for actual sexual intercourse also increases, so being frank ahead of time that these interactions are being shared for the joy of the interactions themselves, not to lead to sex, so there aren’t hurt feelings or disappointment on either party’s side later will be helpful.

Here are some intimacy-provoking activities you might want to try with your partner:

• Leave love notes for each other in unexpected places, like taped to the bathroom mirror, in your lover’s lunch, folded up and left on his pillow, tucked away in a clothing drawer you know she will open the next morning, or on the dashboard of your partner’s car.

• Go for evening strolls together (if you are able). Or sit outside and look up at the night sky holding hands.

• Engage in active eye contact. When people are first dating, they can’t stop looking at each other, but after being together for a while, it seems that eye contact fades. Set aside time each evening to sit and truly look at each other.

• Make a point to kiss each other upon entering and leaving a room… every time.

• Commit to constant, consistent, touch for an hour per day. Sit together, holding hands, massaging/stroking each other, and staying physically connected for an hour while you talk to each other.

• Share a glass of wine, cup of tea, piece of pie, piece of cake, bowl of hummus and veggies – whatever you both enjoy. While you do so, share stories about your day with each other.

• Laughter is a wonderful bonding experience. Have a joke telling contest; each of you can research jokes, or make up jokes and tell them to each other. No matter how cheesy they are, collapsing into fits of shared laughter will be intimate and loving.

• Cook a meal together. There is something about the close quarters of a kitchen, the shared work of cooking together, and warm smells of wonderful food that induces feelings of intimacy and bonding.

• Be playful with each other. Tickle each other, be silly, and be lighthearted.

• Cuddle in bed while reading a book, listening to music, or watching a movie.

• Sit together and talk… about your day, not about bills, the kids, or your health. Talk about your dreams, your desires, things you like and dislike about the world, places you would like to visit, etc. Make a shared dream.

The heat and passion of a new relationship fades. I think long-term happiness is truly about choosing to be with your partner every day and finding new ways to express your love and commitment to each other, through every vicissitude of life. Finding ways to be emotionally and spiritually passionate about your partner, through steps like outlined above can be far more fulfilling, and less likely to fade, than physical attraction. In my book, “The Marvelous Transformation: Living Well with Autoimmune Disease,” I share my relationship with my husband, and how we manage to support each other emotionally, physically, and spiritually, despite my disease.

I believe one of our greatest strengths is that our love for each other can transcend how often we have sexual intercourse. The power of our union is achieved, instead, in how we wake up every morning committed to making sure each other feels loved, happy, fulfilled, cherished, and appreciated. I hope, through these tips, you and your partner can approach the month of love with renewed vigor, without fear, and perhaps even take a new approach to your relationship throughout the year, rather than just at Valentine’s Day.

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