FIGHT LIKE A MOTHER: Chapters 1 – 3

CHAPTER 1
Chronic-Schmonic

When I am sad, I stop being sad and be awesome instead.
-Barney Stinson (Neil Patrick Harris),

How I Met Your Mother

Not to brag or anything, but when I was first diagnosed with fibromyalgia I was very brave. I was the epitome of grace and inspiration. I walked around with really good hair and a nice butt — the kind that looks good in yoga pants. When I slowly sashayed by, people would whisper, “Look at her! She has a life-changing chronic illness and a shapely derriere! What a vision!” And ever since then I have been inspiring the masses with my good hair, curvaceous booty, and amazing attitude.

Not so much.

I have flat hair and a flat ass. A back-with-a-crack. A no-butt. Also, I was like most other people in the world and went through the messy stages of grief[1] when diagnosed with a chronic illness. But to ease ourselves in, let’s go through the steps as if we suddenly had no access to chocolate.

  • Denial. “I’m sure there’s chocolate somewhere!”
  • Anger. “I’m pissed there’s no chocolate!”
  • Bargaining. “I’ll never swear again if I find some chocolate!”
  • Depression. “There’s no chocolate and I’m a horrible person.”
  • Acceptance. “There’s no chocolate and I can deal with it. Probably.”

Yup, these stages aren’t just for losing a loved one. They also work for any major life loss — like being diagnosed with a chronic illness. Not everyone goes through the steps the same way — some people skip steps, and there’s no set sequence. “The stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another.”[2]

I did depression at least twice. I skipped bargaining. Probably because I spent such a long time in the anger and depression stages. Or because I’m so advanced.

Denial
“Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.” [3]

Welcome to my first stage of grief when faced with a chronic illness. Can I serve you a hot, steaming bowl of denial? Lots and lots of denial. Here’s how the “conversation” about fibromyalgia went with my doctor the first time I was diagnosed. I use the word “conversation” loosely as I said nothing, and sat there with tears and snot streaming down my face, too tired to reach for a tissue.

What the doctor actually said (as confirmed by my husband, Demetri, who was present):

“So, it appears you have fibromyalgia. Fibromyalgia is a condition characterized by pain all over your body, tender points, fatigue, and poor sleep. It can be triggered by stress or a physical injury. You should probably quit your highly stressful job. Do you want a bunch of pain meds?”

What I heard:

“You are not really sick. You are a wimp. You are, in fact, the biggest wimp I have ever seen in 28 years of practicing medicine. Also, you are lazy. You just need to apply yourself and work hard. It is my conclusion, and the conclusion of everyone in this office, that you are a bad person. You have a flat ass and bad hair. Do you want a bunch of pain meds?”

In short, I viewed my chronic illness as a personality “issue” instead of a medical condition. I viewed it as something I could change. I felt like the secret I held for so long was out — my family and friends now all knew, knew for sure, that I was lazy, weak, and unreliable. I didn’t try hard enough. I was a quitter.

I thought about all the things I had done in life that were maybe not so good: I told my husband he looked okay in a mock turtleneck; I got a C in ceramics class in college; when I was six, I sold lemonade made out of gutter water to neighborhood kids and then my mom had to go door to door to make sure none of the kids were poisoned. Clearly, I could be better in so many ways — a better person, a better friend, a better daughter, a better wife. I just needed to suck it up and be like everyone else: energetic, strong, capable.

So I tried becoming a better person. A nicer person. A well person. Instead, I became depressed.

Depression
“If grief is a process of healing, then depression is one of the many necessary steps along the way.” [4]

Somehow on my quest to be a better person, I couldn’t manage to get out of bed very often. Or leave the house. Not that one can’t do good in the world as a bedridden recluse with poor personal hygiene, but those characteristics seem to hinder rather than help. So I stayed in bed, cried, and thought about how my laziness was a drain on my friends and family. I thought about Demetri and how he married me just two months before. He thought he married a vibrant, hot chick who could lift more than 15 pounds and could use a can opener. Now, in a matter of weeks, he was hitched to a sniveling weakling with a life-changing chronic illness. And I still had a flat ass.

Demetri, my kind husband who, by the way, has a very nice ass, just smiled and laughed when I asked if he was going to leave me because of either (a) my lack of a butt, (b) my laziness, (c) the fact that I hadn’t showered in four days.

I gradually stopped crying so much. I showered more. I left the house sometimes. All while continuing to think that my problem was I was a bad person. I did two stages at once: denial and depression. I am a fantastic multi-tasker. Booya!

Occasionally I felt a tiny whisper of a thought, “Maybe, just maybe, I have an illness. Maybe fibromyalgia is real.” I brushed away the thought. I brushed it away because if I was a bad person I could actually change that. But if I had a chronic illness, well, that might be something I couldn’t change.

Then I got mad.

Anger
“Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal.” [5]

Welcome to the anger stage. RAWR! Instead of being all noble and strong, I became like a two-year-old who just had her lollipop taken away. I felt like a big, angry baby with no frustration tolerance, very few brains, and absolutely no ability to think beyond myself. Never mind people who don’t have clean water. Or homes. I had been struck downand I didn’t deserve it! It wasn’t fair.

So I took my anger out on everything and everyone, especially those people/things living in the same house as me. Which meant Demetri. The poor guy took a metaphorical beating. Once, there was even an attempted real beating.

Demetri and I were standing in the living room, face-to-face, arguing about, you know, something, when suddenly my anger surged to new levels. All the unfairness, pain, and despair funneled down to this moment.

I launched myself across the living room directly at my husband, yelling, “Hiiiiiii-YAAAAAAA!” I aimed a mid-air karate kick at Demetri’s nether regions . . . which sadly/luckily (depending on who you ask) fell short. My wild karate kick leap only got me about two feet across the room instead of the five feet I needed to go to reach my target. Damn the fatigue!

I let out a new war cry, “Wrestle me weakling!” I ran, head down and arms flailing, at Demetri.

He looked a bit panicked, backed up to the wall, and said, “Honeeeeey! Nooooo!”

As I pulled him to the ground, he yelled, “I don’t want to hurt you!”

“Ha,” I sputtered in his face. “HA!”

Before I could blink, he pinned my arms to my sides, immobilized my legs with some sort of ninja flip-scissor-kick move, and sat on top of me.

“I don’t want to wrestle you,” he said calmly.

“That’s. Because.” I grunted as I attempted to struggle free, “I’m. Beating. You.”

You might think I would act more like an adult, stop struggling, and get up off the floor. You would be wrong. I struggled until I was worn out. Until I was exhausted and spent. It was a long seven seconds.

Demetri held my arms and sat on me in the kindest possible way until I gave up. I felt charred — burnt up and empty. So full of nothing that I could blow away, I could be pinched into meaningless dust. Demetri slid off me and tried to cup my face gently in his hands. I couldn’t bear to look at him — his soft eyes, the creases around his mouth when he smiled, his familiarity. I rolled over, buried my face in the carpet, and cried. I couldn’t hold it in; I couldn’t hold myself together. I cried because I was so tired. I cried out of humiliation. I cried because I didn’t know how to have fibromyalgia and be myself. “F*** you fibromyalgia,” I thought.

I wish I could write here about how I immediately moved on to the acceptance stage of the grieving process, about how my acceptance changed my illness and my life. But that’s not what happened. Instead, I landed smack in the middle of depression. Again.

Welcome back to even worse fashion sense than usual, carbs, and bad romantic comedies meant for a much younger age group. I thought it was a great idea to wear the same charcoal gray sweat pants, eat a lot of toast, and watch 13 Going on 30 and The Princess Diaries. Every day. Also, I didn’t really leave the house. I cried a lot. I went to bed at seven p.m.

Acceptance
“Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. . . Finding acceptance may be just having more good days than bad ones . . . .” [6]

Eventually, there is a stage called acceptance. It’s not a constant state of being. It’s more like flashes of accepting moments: moments of progress, moments of ease, moments of feeling like whatever we are is enough.

Several years ago, when I went to see yet another fibromyalgia specialist, I got schooled in my big picture version of acceptance. I learned that my “acceptance” was rather non-existent. I was afraid (and ashamed) that the specialist would tell me I didn’t have fibromyalgia, that I was just lazy and weak. I was afraid he would confirm that the whole chronic illness thing was my fault. However, the specialist confirmed the diagnosis of fibromyalgia and added chronic fatigue and severe iron deficiency.

When I went to see the doctor I feared he would tell me, “Well, golly, no. No, you don’t have fibromyalgia. You’re just a big wimp. Now go out and be better!” When he didn’t tell me that, I realized not having fibromyalgia was a fear . . . and a hope. A hope that maybe I was okay, normal, fine. I’m not not those things. But I’m not fully those things either. I’m in-between.

At first, I was angry at being banished to The In-Between. I was angry at being sent there forever. I was bitter and scared and falling apart. But only a little. I realized the In-Between is my version of acceptance.

Most of the time The In-Between is not a terrible place to be. It can be a little grey and a little lonely. But I’m making myself a room here. With yellow curtains and a braided rug. A tea pot with fading roses painted on the side. Books. A rocking chair. A green and heather knitted blanket. I am learning to be comfortable here. I am learning to live in this new space of being unwell.

Truth be told, I fought against this idea of learning to be unwell for a long time. I shoved it aside with scorn and anger declaring, “What the (insert swear word of choice)!!! Idon’t want to learn to be sick! I want to learn to be well!”

Now I think I have to do both. I need to learn how to catch the wave of wellness when I can. And I need to learn how to batten down the hatches and be . . . unwell. I need to learn to be unwell the best that I can, because all this struggling against my illnesses, all this turning against myself, is killing me. I don’t know for sure, but I suspect that learning to be unwell is a skill. I suspect that learning to be unwell while still participating in my life with love, patience, and meaning is the best way to fight. I also suspect it takes a lot of practice.

My acceptance is a work in progress. I bask in it when it’s there and, when it’s gone, I trust I can gently pull it back to me.

Bargaining
“We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what it was… Guilt is often bargaining’s companion.” [7]

I wrote earlier that I skipped the bargaining stage. Well, that was a total lie. I must have been in denial. I often think about the things I wish I could do. I dream about what my life, relationships, and career would be like if only I didn’t have fibromyalgia and depression. And it’s just now, after seven years of this wishful thinking, that I’m learning to let it go. I am where I am. Right now I’m trying to stay in the moment – whether it’s painful or joyful – because it will eventually change into something else. And, really, I am also here because I have no choice. I have fibromyalgia.

So, what about you? Maybe you’re thinking, “Well, crap. I thought all I had to do was deal with my chronic illness, and now I have to deal with all these stages as well?” If you’re thinking something with more swear words, it probably means you’re already at the anger stage. Congratulations! If you’re thinking, “Hey, I just got diagnosed and it’s aaallllll good.” You are either (a) in the acceptance stage — try not to brag too much, or (b) in denial. Wherever you are right now, know that tomorrow, or in ten minutes, you may be somewhere different. That’s okay. It just means you’re doing it right — you’re being human. Wherever you are, here are some tips to get you through.

Chronically Awesome[8] Tips:
Adjusting to a Chronic Illness Diagnosis

  • Don’t wrestle anyone. Enough said.
  • You can only be where you are. Be loosely aware of the previous stages and let your body and mind do what they need to do. You can encourage yourself along:
    o  not good: “I’m stupid, which is why I’m stuck in the depression phase.”
    o  good: “One day I will feel more accepting of my illness than I do now. That day is not today, and that’s okay.”
  • Don’t go it alone. Ask for help. Make sure you get it. Trust me, these stages are better and shorter if you let someone walk with you, even just part of the way.
  • Have a good primary care doctor and a good therapist. Use them.
  • Don’t initiate any major life changes. Adjusting to your chronic illness and figuring out how to feel your best is enough. For example, don’t decide to embark on a new career or take up roller derby just after being diagnosed.
  • Have good snacks. This is just good general life advice.__________________________________________________________

[1] Kubler-Ross, Elisabeth. “On Death and Dying.” (New York: Scribner, 1969).
[2] “The Five Stages of Grief The responses to Grief that Many People Have.” Grief.com. Retrieved June 28, 2013. http://grief.com/the-five-stages-of-grief/
[3] ibid
[4] ibid
[5] ibid
[6] ibid
[7] ibid
[8] “Chronically Awesome” is a servicemark and copywrite of The Chronically Awesome Foundation (http://chronicallyawesome.org/) and is used with permission.

CHAPTER 2
NOW WHAT??

The first step is always the hardest,
but it’s the only way to reach the second step.
– Susan Gale

The first time I was diagnosed with fibromyalgia, my doctor told me to quit my job and gave me three different prescriptions for pain medication. That was it. He didn’t even give me a badly photocopied sheet with sleep advice and stretching tips. It was a total rip-off. He also didn’t offer me a goodbye tissue as I walked out the door crying.

Demetri drove me home, his hand on my knee. At that moment, his hand was the only thing keeping me there – the only thing keeping me from shriveling up into nothing and being blown away. I focused so hard on his hand — the weight, the strength, the promise that he was with me, and that I was real. When we got home I curled up on the couch and cried. All I could think was, “Now what?”

For the next few weeks I couldn’t do anything. I was too fatigued and too overwhelmed. It took all the energy I had to move from room to room and occasionally put chocolate in my mouth. Then two things happened: my mom came to stay with me for a few days, and I went for a walk with my best friend of 30 years. When my mom came, she cooked for me and she sat with me when I didn’t even have the energy to talk. She made me feel safe. My beautiful, wonderful mother gave me the first glimmer of hope that things might be okay.

About a week after being diagnosed, right around the time I quit my job and we realized we were going to have to move to a place with cheaper rent, my friend Tyffany came over and took me for a walk. She picked me up, drove me to the arboretum, and told me to get the hell out of the car. My goal was to walk a mile, something that had previous been no big deal. We walked — slowly and carefully. I still felt so tired and fragile. Tyffany is a competitive person. She’s been known to topple over a Scrabble board when losing, and she likes to do things fast, crazy, and adventurous. I have never been able to keep up with her on a bike or on foot. I usually just wave to her as she is climbing rocks and doing pop-a-wheelies. But on this particular day she walked with me, exactly at my pace. I’m sure it practically killed her. We walked for 25 minutes and still hadn’t finished the mile; we took a shortcut back to the car. What I remember from that day is the brightness of the flowers in full spring bloom, the blue of the sky, and the feeling of having someone walk beside me, our elbows occasionally bumping and our feet in exact rhythm.

Now what?

Now it’s your turn to join the club of Chronic Super Heroes. Condolences and welcome! You’ve been diagnosed with a chronic illness. You’re wondering, “Now what?” Well, right now you are going to give yourself a few days to grieve, to shake your fist at the sky, and to sleep. You are going to mobilize your support systems. Then you are going to get up and fight.

Yes, you are going to get up and fight. I can feel it. You may be fighting to get well. You may be fighting for the energy to play Pretty Princess Glitter Fairies with your child. You may be fighting to keep a sense of yourself throughout your illness. You may be fighting to get through the afternoon. No matter what it is, know that you are worth fighting for. And know that you need some help.

Chronically Awesome Tips:
How to Get Helpful Help

  • Decide WHAT you need.
    Ask for specific help. If you don’t, you won’t get what you need. In fact, you might get some things you really don’t want, like unsolicited advice. People want to help but they often don’t know how to help. Here are some ideas on what you may need help with and how to ask:
Meals “We could really use a dinner on Wednesday night.”
Groceries “If you’re going to the store, would you please grab me some string cheese and chocolate?”
Rides to appointments “Would you mind dropping me off at the doctor’s on your way to the store?”
School pick up or drop off “I’d really appreciate it if little Sylvia could catch a ride in to school with you.”
Child care “If you could take little Julian for two hours that would be so helpful.”
Outings for your kids “Hey, can little Lily come with you to the park?”
A walking buddy “Can you come over and take me for a 15 minute walk? I know I won’t do it on my own.”
Yard work “If you could spend 30 minutes mowing our front yard that would be incredible!”
Cleaning “You would be my hero if you vacuumed my living room!”
A shopping buddy “Can you drive me to Target and then help me lift things into the cart?”
Company “I would love to have someone just come over and hang out for 30 minutes.”
  • Appoint a Magical Manager. Under no circumstances are you to arrange and schedule all this help yourself. Ask a trusted friend to coordinate the help for you. Make sure this friend can say no: “No, Thursday afternoon is not a good time to visit.” “No, she doesn’t want to try kale brownies.” Also ask this friend to keep track of who does what so you can thank everyone later. Having a Magical Manager is really important.  Give her a tiara and the title of Magical Manager. Tell her what you need and when, then direct people to email her instead of you. If you do not do this, you will spend all your time answering emails and scheduling stuff and it will make you want to claw your eyes out. This is not helpful. Save your energy and let someone else manage it.
  • Use a free online signup to organize helpers. Obviously, your Magical Manager should do this. These sites let your Magical Manager set up specific categories of need (including times and dates) and then allow people to sign up for what they can help with.  The sites also allow easy communication between organizers and helpers (it sends automatic reminders etc.) — a huge time saver for your Magical Manager. Some sites I like include: signupgenius.com, carecalendar.org, http://www.mealtrain.com.
  • Use social media (Facebook, Twitter, etc.) to ASK for help. Yeah, you actually have to ask. People post on Facebook stuff like, “The sun is out!” and “My dog pooped on the floor L,” so it’s okay to post that you need a bit of help.  If you are not comfortable announcing your specific illness, just say you are feeling unwell and need some support. If social media is too public for you, use email. Or better yet, have your Magical Manager send out an email on your behalf.  Social media can surprise you, though. People generally want to help if they can, so it’s the best way to get the most help from the greatest number of people. You don’t want to constantly tax the same small group of friends. A sample post: “Hey Fabulous Friends, Having a bit of a rough time right now. In need of meals, school pick-up, and groceries. I’ll pay you back in chocolate and love. Please contact Tyffany Smith at tyff@email.com.”
  • Do not allow people to just “pop” by. Ask them to give a specific time or provide them with a specific time window. For example, “Between 3:00 and 3:30.” Otherwise you can’t rest and plan your day because you never know when someone will show up. Asking people to drop stuff on the doorstep is also a good idea. That way you don’t feel like you have to entertain and they don’t feel like they have to stay.
  • It’s okay not to visit with everyone. It is perfectly fine to give your magical manager a list of people you don’t really want to see. When I’m at my worst, there are very few people that I am comfortable spending time with. Anyone else just causes me stress and anxiety.
  • Provide a list of food allergies, food likes and dislikes. Give this list to your Magical Manager. It won’t be helpful if someone brings over enchiladas and your kid makes gagging noises when asked to eat something smothered in sauce.
  • Give people an out. Especially when asking for help on an individual basis. For example, send an email and begin with: “I am writing to ask you a favor. If you aren’t able to do it, I totally understand. (Then add some kind of compliment here like, “I’ve so appreciated all your help in the past.)”

How the heck do I feel better?

A not-so-awesome fact: There is no universal way to feel better. What works for me may cause crushing pain or fatigue for you. (Yet another reason to shake our fists at the sky.) So, what we have to do when first diagnosed is try things, one at a time, until we find what works for us.

This is a pain in the ass. It’s slow. It’s frustrating. And, I’ll be honest, not everything we try will help. Some of our attempts will be humiliating (see section on swimming.) But here’s the clincher: It’s worth it. It’s worth it to feel better than we do when first diagnosed, to feel a bit more in control, and to feel like we can work with our bodies instead of in spite of them.

Don’t worry. I’ve totally got your back.  Below is a list of things that may help in controlling symptoms like pain, fatigue, and poor sleep. Chronic illness can also cause depression, anxiety, memory loss, and stress. Yup, chronic illnesses can cause . . . wait for it . . . chronic illness. Whoever set that up clearly should be fired. I am not including specific medications, supplements, or diets on this list; it’s best to work with a medical doctor or naturopath in those arenas.

So. The list. Put a check mark next to an item if you are even kinda-maybe-sorta interested in exploring it as a way of managing your health. Be sure and check at least one form of exercise because if you don’t do it now, your doctor will make you do it sooner or later. There will be more on exercising later in the book. Spoiler alert! I fall off a bike and a balance ball.

Okay. Pretend I am holding your hand while you look over the list — your non check-marking hand. Pretend I am whispering in your ear in a reassuring way. Pretend I have really good cinnamon-y breath: “It’s okay. You can do this.



Things that may help as part of a regular routine:
Things that may help occasionally  Things to avoid:
Walking Whining Stress
Jogging Sniveling Caffeine
Swimming Cursing Alcohol
Biking Online shopping Smoking
TheraBands Chocolate Negative Self Talk
Exercise Ball Staying in bed Being a recluse
Yoga Heating pads  
Pilates Staring at a wall  
Tai Chi Mindless TV  
Strength training Good movies  
Acupressure or acupuncture Good books  
Dietary changes (speak with your doctor) Online support group  
Therapeutic massage    
Physical therapy    
Talk therapy    
Meditation    
Chiropractic work    
Naps    
Transcranial Magnetic Stimulation    
Medication    

It’s okay to be overwhelmed. It’s okay to be scared. But don’t let the fear keep you from trying things. At least one thing on this list will help you. Really, it will. Pick one thing, just one. Try it. If it causes major pain, stop.

For example, if it’s exercise, start slow. Walk for a few minutes a minutes a day three times a week for a few weeks. Gradually increase your time. Then reevaluate. When you find something that helps, you’ll know it. Jump gently for joy! Celebrate with cake! Or a nap! But whatever you do, make that thing — the thing that helps — part of your regular routine.

 

3
TALKING ABOUT IT

When you don’t talk, there’s a lot of stuff
that ends up not getting said.
-Catherine Gilbert Murdock,
Dairy Queen

I am lying on the window seat with the blue batik cushion. Outside the bay window the pink plum tree is blowing in the breeze and sunlight is dancing between the leaves. Everything is moving — the air, the light, my heart, my daughter’s hand.

Zoey hovers above me, her forehead wrinkled in concentration. She is smoothing my hair away from my face and whispering, “Mommy? Is this better? Do you feel better now? Mommy?”

I feel loved. I feel comforted. But I do not feel better. How do you explain bone-deep, persistent fatigue and pain to a five-year-old? How do you explain fibromyalgia?

Zoey continues to “fix” me. She carries in her toy workbench from the playroom. She chooses the red hammer, the green screwdriver, and inexplicably, a purple hair comb for a baby doll.

“It’s okay, Mommy. It’s okay. I know what to do.” She begins gently to hammer my body — the touch is so soft it feels like the brush of velvet. She screws together my joints moving from my toes up to my ankles, knees, and elbows. She finishes each twist with a wet kiss. She gets out her circular saw and goes to work on my stomach.

She builds me a new body, piece by piece. When she is satisfied with her work, she grabs the comb. She gently detangles all my hair and spreads it out into a fan on the cushion beneath me.

“Mommy,” Zoey whispers, “You look just like a mermaid! A pretty, pretty mermaid!” Her face shows so much awe that it takes my breath away.

“I feel like a mermaid,” I whisper back.

Zoey holds my hand and we are still for a minute. I imagine myself as a mermaid — floating, and unaware of my body. The water under the ocean is just like the light through the trees — dappled and moving.

I am not my body. I am not pain. I am not fatigue. I just am.

Eyes closed, still touching, I feel Zoey’s presence. I feel golden and warm — like I’m cupping the first firefly of summer in my hands.

Chronically Awesome Tips:
Dos and Don’ts —
Talking to Your Kids About Illness

Dos:

  • Talk to them. Don’t put it off. Kids are perceptive and they know when we’re not ourselves.
  • Talk to them often. Once isn’t enough. Allow for open dialogue.
  • Include your partner or other important adult.
  • Pick an appropriate time and space. Talk in a safe place (like at home) and when you have time. Sit in a space that allows you to see each other’s faces and allows your child to have physical contact  with you.
  • Keep it simple. Relay the information in an age appropriate way to your child.
  • Keep it honest. If you don’t know the answer to something, it’s okay to say that.
  • Say, “I love you.” Say it often. Make it clear that although your lifestyle may be changing a bit, your love for your child is huge. It doesn’t matter how old your kids are, they need to hear this.
  • Tell your child she is not to blame for the illness. This is especially important for younger kids.
  • Answer questions. Again, be honest, simple, and direct. Only give the information your child is asking for. 
  • Tell your child that she will be taken care of. Explain that friends, neighbors, grandparents, uncles, etc. may be stepping in at times to help take care of her and things around the house. Let her know that she will never be without support, help, and love.
  • Laugh. Find something funny and poke fun at yourself and/or the illness. Because there is something silly about it. Really. 
  • Find other adults your children can talk to.  Designate a grandparent, aunt, or best friend as another adult the child can go to with questions or concerns. Prep the other adult with the information you have already shared with your child. Invite the other adult to have a conversation with you and your child.
  • Find a way your child can help you if she wants to.  Everyone wants to feel useful. Ask your kid to bring you a glass of water or carry a bag for you.

Don’ts:

  • Don’t keep the illness a secret from your child. Kids are way too smart for this. Include them in an age appropriate way. Not knowing can be a scary thing.
  • Don’t tell them about the illness for the first time in the car. The car does not allow you to see your child’s face or hold his hand. The subtext is that you don’t really want to talk about it.
  • Don’t give too much information at once. Pay attention to what your child can take in and process. Let the child be the guide of how much and what you tell.
  • Don’t assume your child doesn’t want to talk about it. The first time you bring up your illness, your child may be totally silent or change the subject. Tell her the basics of what she needs to know, then allow her time to process. Come back to it.
  • Don’t hide all your feelings. It’s okay for your child to know you are sad or mad about your illness.Showing kids a controlled emotion lets them know it’s okay to feel those things too. So if you tear up, no worries.

Resources for talking to children about illness:

  • Bright Horizons Family Solutions (brighthorizons.com)
  • The Child Study Center (aboutourkids.org)
  • Wonders and Worries (wondersandworries.org

Talking to Your Partner
This is probably not the best way to begin a conversation with one’s partner: “Just so you know I have large amounts of internal rage — and it’s mostly directed at you.” Thankfully, I followed this great conversation starter with, “I know my rage is waaaay disproportionate to what’s going on . . . BUT I CAN’T HELP IT.” Then I cried.

Actually, my rage was mostly at fibromyalgia. But it’s hard to be angry at an illness. Especially when it’s your illness. You can’t yell at an illness. You can’t be passive aggressive to it. You can’t wrestle it. You can’t walk away from it and slam the door behind you for emphasis.

I was diagnosed with fibromyalgia shortly after Demetri and I got married. It changed everything. It changed our hobbies, our meals, where we lived, our finances, our future. Afriend with a chronic illness recently told me, “Once I became sick, it was like each of us had to figure out a whole new relationship with a whole new person. It was starting from scratch.” Truer words have never been spoken, my friends.

I was mad, sad, and exhausted. So was Demetri. Demetri is the first to admit that his emotional expression range is that of a teaspoon. Mine is a football field. Demetri expresses his feeling with quiet stoicism. And this sometimes really pisses me off. Although I’m sure my unfiltered, wild, flailing mountain range of intense emotions is not the least bit frustrating for him. Riiiight.

So, there we were, newly married and facing a highly stressful medical crisis. I had to quit my job. We moved from an urban city to a . . . wait for it . . . dairy farm.  Demetri went to work during the day and I lay in bed in pain, lost and lonely. I called him a lot with nothing to say. When he came home at night I sometimes didn’t get up from the couch.

We didn’t know who we were as a couple anymore. We couldn’t do the things we were used to doing together: biking, taking long walks, going out to dinner, taking day trips, playing long games of Scrabble. And it was my fault. Sitting was painful. Walking was painful. Being out in public made me exhausted.

Sometimes we cooked together. Sometimes we watched TV.  But mostly we stopped talking. Eventually we started yelling. Both of us. It was the first and only time I have heard Demetri yell. He slammed out of the house late at night and walked across the cow pasture until he was swallowed by the darkness. He came back hours later, both of us cried out and scared. And we knew something had to change. We went to couples counseling. We worked on our communication.

It wasn’t pretty. And sometimes it still isn’t. I yell. Demetri becomes silent. We both fume with anger and pain. But most days we muddle through. Some days we even soar.

Chronically Awesome Tips:
Dos and Don’ts —
Talking to Your Partner About Your Illness

Dos:

  • Include your partner from the beginning.If possible,have your partner attend some of your medical appointments with you. Once you are diagnosed, make an appointment with your specialist specifically for you and your partner. Use the time to have the specialist explain the diagnosis to your partner. Allow time for you and your partner to voice questions and concerns.  
  • Consider couples therapy. Seriously. Make an appointment right now. You are both under huge amounts of stress. All couples will benefit from a third party providing mediation, insight, and support.
  • Recognize that your partner needs support too. Yes, your illness is happening to you. But it’s also happening to the people who love you. You may not be in a position to offer support because you’re dealing with your own stuff. Acknowledge that your partner needs support and give him the time to find it.
  • Make a plan. Work with your partner to decide what your family needs help with and how often. Make it clear that your partner can’t take on everything. Help him be okay with accepting help.
  • Be honest and direct. Tell your partner how you feel and what you need from him. Be specific.
  • Say “I love you.” Even if your partner knows it, say it out loud. Often.

Don’ts:

  • Don’t think your relationship will stay the same. It won’t. Chronic illness changes things. It doesn’t have to change them for the worse. Get support in maintaining your relationship.
  • Don’t take your partner for granted. Say thank you for the things your partner is doing to support you.

BONUS! Chronically Awesome Tips for Your Partner:
Dos and Don’ts —
Talking to Your Chronically Ill Partner

Dos:

  • Believe it. Your partner has a chronic illness. It’s not in her head. She’s not making it up. Using hurtful words like “lazy,” “crazy,” and “weak” don’t help.
  • Show up. Go to doctor’s appointments and information sessions. 
  • Know about it. There is no way you can fully understand what is going on without talking to the doctor. It’s fine to do your own research, but ask the doctor where to look for the best information.
  • Accept help. You can’t do everything alone. You shouldn’t have to. There are people who love you and want to help. Let them.
  • Remember that you are both doing the best you can. Acknowledge it.
  • Say, “I love you.” Your partner really really needs to hear this. So much is changing, she needs to hear that your love for her is a constant.

Don’ts:

  • Don’t doubt her illness. If she could make herself better, she would. If you could cure her, you would. But neither of you can fix it, so you have to deal with it.
  • Don’t substitute research for talking with the doctor. There’s a lot of info on the web and a lot of it isn’t reliable or true. For example, there are sites that say you can cure cancer with only positive thoughts. There’s “research” that says chronic fatigue can be cured by jogging. Definitely learn more about your partner’s diagnosis, but get your info from trustworthy sites.
  • Don’t try to disprove your partner’s diagnosis. If you try hard enough, you’ll find that some guy living in his mother’s basement published a research study with a sample group of two cats proving fibromyalgia doesn’t exist. Showing this to your partner doesn’t help. It hurts.
  • Don’t try and cure your partner with the latest wonder drug. If you try hard enough, you’ll find that some guy living in his mother’s basement published a research study with a sample group of two ferrets proving chronic fatigue syndrome can be cured by this new wonder drug called aspirin. (OMG! Have you heard of it?!) Again, talk to the hand.
  • Don’t ignore your own stuff. You don’t have a chronic illness but your world has still been thrown into disarray. It may feel like you’ve lost your partner, your best friend, your co-parent. You may be going through your own stages of grief. Don’t do it alone. Go see a therapist. Deal with your stuff. And yes, it’s fair to expect your partner to deal with her stuff.

Resources for more information on health issues:

  • Mayo Clinic (mayoclinic.com)
  • National Institute of Health (health.nih.gov)
  • The New York Times Health Guides (health.nytimes.com)

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Thanks for reading the first three chapters of FIGHT LIKE A MOTHER.  

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One thought on “FIGHT LIKE A MOTHER: Chapters 1 – 3

  1. Pingback: Reasons | Joslyne Decker

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