Living with an Invisible Illness

by Elizabeth Walker

Throbbing, wrenching, searing, exhausting, sickening, miserable, and dreadful. Those are the words I chose from the McGill Pain Questionnaire to describe the pain I felt during a flare of my fibromyalgia last week.

I’ve dealt with chronic ailments my entire life. When I was in elementary school, it was migraines. As a teenager, it was irritable bowel syndrome and what I now know was endometriosis. In my early twenties, I developed chemical sensitivity and was covered in itchy red welts over my entire body for two years straight.

Then, in my mid-twenties, the chronic, widespread pain set in. Pain. All over my body. All day. Every day.  Along with the pain was sheer exhaustion. No matter how much sleep I got, it was never enough and I would seriously melt down over the thought of the energy it would take to do simple tasks like filling the dog’s dish or responding to an email.

After nearly eight years of the pain and exhaustion, visits to specialists, a battery of tests, and several stints in physical therapy, I was finally diagnosed with Fibromyalgia. Fibromyalgia (FM) is a central sensitization syndrome. Basically, my central nervous system is on high alert at all times and pain, and other sensory signals, are amplified.

It turns out, that all of those other problems I’d had earlier in my life fall under central sensitization syndromes as well. Migraines, irritable bowel syndrome, chemical sensitivity, endometriosis. They all fall under the same umbrella. As do temporomandibular disorders (otherwise known as TMJ or TMD) which I have also since been diagnosed with. Additionally, interstitial cystitis, restless leg syndrome, and even post-traumatic stress disorder are categorized this way. Often, as in my case, patients present with different central sensitization syndromes over the course of a lifetime.

Most of these syndromes are invisible, but the implications on those diagnosed can be debilitating. My FM has caused me pain nearly every day of my life for the past 15 years. When I get what I call a flare, I’m in excruciating pain, shaky and nauseated, for at least two and a half days at a time. Flares can last up to a week and can occur as frequently as twice in a week.  I’m in complete misery. Yet, people often tell me when I’m in a flare, that even though I report that I feel dreadful, I look great.

I never really believed this until recently. A co-worker emailed me a photo that he took of me at a work event. The day it was taken, I was dealing with maxed-out pain. The absolute worst it gets for me. It was so bad that, not to freak anyone out, I was actually thinking about how I could put myself out of my misery in a way that would have the least amount of impact on my family. How would I do it? Where? When, exactly? However, looking at the photo, you would never know it. I’m smiling while I work, carrying my big heavy camera, walking around in strappy high heels.

A photo of me on one of the most miserable pain days of my life.

My chronic pain and fatigue have had a huge impact on my infertility journey. When I was finally diagnosed with FM, I was already trying to conceive. Because of this, I wasn’t able to try any of the medications used to treat FM. None of them were appropriate for someone who was pregnant, or trying to get pregnant. I couldn’t take the medications, but I couldn’t get pregnant either. Then, I started taking other medications to help me get pregnant and they made my pain worse. Yet, I still couldn’t achieve a pregnancy.

It was a vicious cycle and I felt like I was running a marathon that would never end. So, I took a break to try meds for a while. Cymbalta. My miracle drug. I don’t know how managed before it. While I still have pain nearly every day, the intensity of my day to day pain is decreased while I’m taking this medication. Life is much more manageable.

When quite a bit of time had passed and it was time to get back to fertility treatments, I had to go off my meds. For me, weaning off Cymbalta is done gradually over the course of a couple of months and the withdrawal symptoms can be unpleasant, dangerous even. Brain “zaps” (which feel like electric shocks shooting through your brain), vertigo, anxiety, nausea, tremors, visual disturbances. Not only is this scary, I was terrified of how intensely my pain would return after the Cymbalta was out of my system. However, I couldn’t move forward with treatment for infertility without discontinuing the meds I take for pain, so it was the only way to go.

No more Cymbalta, just more infertility medications. Medications delivered orally, by suppository, by injection. No pregnancy, just more physical and emotional pain. A variety of invisible ailments. Invisible disabilities.

I’ve been thinking about this a lot over the past few weeks. A year ago I changed my diet. I now eat a Paleo diet and have had some allergy testing so I avoid the foods I found out I’m allergic to as well. No sugar. No dairy. No grains. No eggs, pineapple, paprika, asparagus, crab, trout, and more. The results of the change in diet have been life changing. It’s meant that I’ve actually had some pain free days over the past year. Something I hadn’t experienced in well over a decade. However, the past couple of months have been hard. I’ve continued to eat a strict diet, but I’ve had more frequent flares. It scares me. I wonder if it means that I’ll soon go back to living in fear like I did not long ago. Back to week long flares several times within a month.

The other reason I’ve been thinking about it is because I’ve joined the Diversity, Equity, and Inclusion committee in my department at the University of Michigan. I’ve been working on populating the committee’s website and have been gathering information from the members of our team. Which areas, pertaining to diversity, should I list as their areas of interest or expertise? Which topics should people feel comfortable approaching them about for mentorship or assistance?

I’m guessing that the majority of the people on the committee with me, let alone that work in my 1000+ person department, have no idea that, despite looking healthy and “great”, I’ve become well versed in the human resources policies for medical leave, and my rights as a person with a disability, due to my fibromyalgia, my infertility, and the two medical leaves I had to take within a year of each other as a result. They would never guess that the issues I can help my fellow co-workers with are disabilities, medical leave, grief, miscarriage, and more.

Through it all, I’ve had an amazing support system. Friends who understand when I need to cancel plans because my pain is unbearable. Family members who make sure the holiday meals include foods I can eat. My husband, who let’s me sleep the entire day if I need to, and plays me funny cat videos to help take my mind off things for a little while.

I also have an outlet through my art. Somehow, creating is healing. Whether it’s the calm I feel brushing acrylic paint across a canvas, or the meditative act of weaving with wire, I feel steady. I feel like I’m more than my pain. More than my disability.

I invite you to join me, and The ART of Infertility, at SEA-ART-HEAL: The ART of Infertility in Seattle. You’ll have an opportunity to see the healing affect that art has had on me, and on others in the infertility community, through a collection of art and poetry on display at the Art/Not Terminal Gallery at the Seattle Center the entire month of April. Our exhibit opening reception is April 1, from 6 – 9 pm.

This exhibit, and the accompanying film screening of the movie, One More Shot (with a Q&A with the filmmakers), and a blackout poetry art workshop, are funded in part by the Seattle Office of Arts and Culture and sponsored by Pacific NW Fertility, Seattle Reproductive Medicine, Embryo Options, Acupuncture Northwest and Associates, and SIFF Film Center. Our media sponsors are ParentMap and The Stranger, and our community partner is Baby Quest Foundation. You can get all the info you need about the exhibit events, including registration, and how to buy a ticket for One More Shot, or reserve your space for the workshop, at http://bit.ly/SeaArtHeal (If you are interested in spreading the word about this event to your networks, please email me at info@artofinfertility.org and I will send you a tool kit :)!)

If you’re not in Seattle, don’t worry. We’ll have a lot of artwork and stories headed your way via our social media throughout April. We also have events coming up in Boston, Washington, D.C., and Los Angeles. You can check out our complete schedule on our website. http://www.artofinfertility.org

Wishing you health and peace on your journey,

Elizabeth

“A Map to Us” – Stephanie McGregor

Today’s guest blog post is from Stephanie McGregor, a Canadian teacher and artist. Read her story and how she is using her art to help her deal with infertility.

blogpost6 My name is Stephanie McGregor. I’m an artist/teacher and have been struggling with infertility for two and a half years now. Until several months ago, my husband I kept quiet with our struggles, until I did a blog post called “The Monkey in the Room”. You can follow this link if you’d like to read it:

http://www.stephaniemcgregor.ca/blog-montauk/2016/1/3/the-year-of-2016

I knew that I wanted to start a project that I could turn to whenever I feel sad about not yet having a baby.

I bought a very large, blank canvas and hung it up in the room that I hope will one day be a nursery. It sat, white and untouched for a while, until an intriguing thought began to unfold.

I could make a map!

blogpost1

A piece of Stephanie’s art work.

As  I started sketching out places that are important to me, a little story started forming and it speaks of all the places that our “lost” child can find us.

At first I began painting our little cedar bungalow and my childhood home (which is actually next door!) I added depth with colour of the trees and wildlife wandering across the canvas. Then, the memories started to come trickling in. Like the way my three sisters and I would run after my dad as he mowed the lawn and the pool parties we once had. My childhood dog still scouts around, a protective light glowing.  Our lost pink paddle boat chugs down the river, leading to the cottage where we spent every summer. The more I continue to work on this painting, the more saturated with memories my “map” will become.

As I’m painting, I also think of my mom and dad’s struggles. They tried for seven years to have children. Eventually, they had in vitro fertilization, which was successful and they had three five pound baby girls (including me). My younger sister came 15 months later, an unexpected, wonderful surprise!

A McGregor family portrait

A McGregor family portrait

 

 

 

 

 

 

 

 

I cannot express how wonderful my childhood was and this is what I focus on as I’m painting. All I want is the chance to have a family of my own to create new memories with. I plead with my future child, saying that here there are:

Adventures unnamed

Creatures to befriend

Discoveries undiscovered

And possibilities to pretend….

 If only he/she could find us!

Some days I am feeling so overwhelmed with emotion that I aimlessly wander over the canvas, dabbing paint with no direction. What am I doing this for?

I’m sure anyone going through infertility can relate to some of these feelings.

Other days I feel hot anger and will brush an orange red sunset across the canvas. What is wrong with me?

 A lot of times, as if in meditation, I spread translucent layers of blue to form soft waves. I can accept this path I’m on. Then again, once in a blue moon, I feel hideous green envy. Why her and not me? I allow myself to paint without worry of ruining this piece.

Other times, I focus my attention to one small part of the map and then revel in the feeling of creating something beautiful. This feeling anchors me.

blogpost3

Other days, I simply sink to floor, my worries weighing heavy and crowding my mind. It sometimes strikes me that this room is supposed to be a nursery, but it is filled with only paintings. I am hit again by fact that besides a paintbrush, my arms are empty.  The fact that I so badly want to make new memories with a family of my own and I don’t know when that will happen.  It’s been two and half years and how much longer do I have to go? Why does it feel so lonely? Does anyone really understand how I feel?

I am also struck by how this journey has changed me. I find that I’ve put myself at a distance from friends and family. I’m afraid to dream too big or wish too much.  Instead of bounding carefree down the road, I step cautiously, looking out for rain. I wonder where this road is going.

But then I glance up and I see what I am in the process of creating. This map is part of my story, one that I can share with my future child.  It really is beautiful. At the end of my story, I wrote to my little lost one:

I can’t map out a life for you that:

Leads you always the scenic route

Away from sadness and pain

I can’t promise you won’t have to walk

Through the dark forest even for a little while

 The very least I can do

Is make this Map to Us

And hope, wait, and dream

That it finds its way to you.

 So I stand up and keep on painting my map. I don’t know exactly where my road to becoming a mom is going yet, but I still have a lot of hope.

I have a few suggestions for anyone who is looking for a project to work on. Why not think of something big that will take a while for you to work on? You can plan out your idea and then whenever you feel like you just need to take your mind off of what you are going through, you can do a small part and not have to think about it very much.

I wish you well on your journey!

To read more about Stephanie’s story and to see more of her artwork, visit her website at; www.stephaniemcgregor.ca

 

 

Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

#startasking: How Infertility Prepared Me to Be a Mom – Camille’s Perspective

Camille Hawkins, MSW, LCSW is the Executive Director of Utah Infertility Resource Center. She reflects on her experience with infertility and shares 5 ways her infertility struggle taught her to be a great mom to her daughters. This post does contain images of babies and parenting. Thank you for sharing your insights, Camille!

I was recently part of a discussion in a “Pregnancy & Parenting after Infertility” Support group. The question was posed: Would you change the fact that you struggled with infertility?

How would life be different if I didn’t struggle with infertility? Even though this was the most difficult experience of my entire life, would I change it? It brought more heart ache, more tears, took more energy, and also more money than any other trial I’ve faced.

The consensus as each group member deeply reflected on this question was a resounding no. If you would have asked each of them in the heat of the struggle, the answer would have been different. But the common theme was that they had gained so much from their infertility journey, and there were still some very difficult parts about it, but they wouldn’t trade it.

IMG_2695

Camille pictured with her infant daughter.

My husband and I met at Utah State University in 2007. Once married, we waited a year to start trying to have a baby. We quickly learned it wouldn’t come easy. After 5 years of tracking monthly cycles, timed intercourse, surgery, fertility medications, injections, intra-uterine inseminations, in vitro fertilizations, a miscarriage, and being completely broken down emotionally, we became parents to two beautiful girls through the miracle of adoption. Becoming a mom was the best day of my entire life. I will never forget that feeling.

Even though my life is now consumed of changing diapers, making bottles, and rocking crying babies during the night, my infertility will always be a part of me. My diagnosis makes it so I will always be infertile. The wound of infertility may be healed in my heart, but the scar will always be there as a reminder of all I went through to get my girls. This journey has shaped my life more than anything else has. It helped me be the best mom I could be.

Here are 5 ways my infertility struggles taught me to be a great mom to my daughters.

  1. Peace – coming to accept my situation was difficult and took a lot of time and energy. I had to grieve every time I had a failed cycle, a failed treatment, grieve the death of my embryos, and the loss of my only pregnancy. I had to grieve having a biological child –the one I always dreamed of looking just like my darling husband. As a woman, I had to grieve not being able to experience pregnancy, child birth, breast feeding, and the things I was raised to most closely associate with womanhood. Through this process, frustration and resentment for my imperfect body eventually turned to peace and acceptance. I learned that things aren’t going to be perfect in life, but I can still be okay. I will teach my daughters their bodies are unique and special, and don’t have to be perfect in order to be beautiful. I will help them find peace and acceptance with the situations they find themselves in so they can look for the happiness and joy that surrounds them.
  1. Balance – I grew up in a culture that taught my most important and divine role would be that of a mother. Everything should revolve around that role, even my education, my career choices, everything. When I realized I was unable to conform to that norm, I was forced to either sit around and do nothing while the time passed, or do something productive with my time. I decided to get a master’s degree in social work and begin a career in counseling. I worked at a nonprofit community mental health center helping children heal from trauma. I volunteered with an organization running kids grief groups. I fell in love with my husband over and over again, traveled the world, and I became a dog mom, enjoying the beautiful outdoors hiking with my two retrievers. Infertility tends to consume you completely, like a black hole. The lows were the lowest I could ever imagine. Learning to keep balance in my life was crucial to surviving the black hole of infertility, and I’m learning that balance as a mom is crucial to being the best mom I can be to my daughters. I would like my daughters to have balance in their lives too, and to know it’s okay to be lots of things, do to lots of things, and most importantly to take care of themselves.
  1. Patience – Infertility makes you wait…….and wait……..and wait some more. It makes you cry night after night, feeling hopeless and that all is lost. False hope is sometimes the only thing you have left. I learned that things don’t work out necessarily in the way I expect, but it’s possible for them to work out in some way. My mom told me I was a very impatient child. I wanted things NOW! Patience is something I was forced into learning through my infertility journey. Now as a mother, patience is my saving grace. Motherhood is not easy; I never said it was going to be. Having patience shoved down my throat during infertility has allowed me to see things in motherhood through a different lens. I can make it through my baby’s crying spell. I can make it through my daughter refusing to sleep throughout the night. I can make it through two babies crying at once……Infertility helped me learn the patience for these moments.
  1. Appreciation – When you yearn for a child, you yearn for the good and the bad. Being a mother isn’t easy, but I realize I appreciate all the moments so much more than I would have because I worked so hard to get there. My girls will grow up knowing how much they were wanted, how much they were sought for, and how special they are. I know I am so lucky, so blessed, and so fortunate to be “Mamma” to my sweet baby girls. I have so much gratitude for their birth families for entrusting us to raise these little girls.

    IMG_6310

    Camille with her two girls and husband.

  1. Determination –I have met many women who struggle with infertility and I have found that these are some of the strongest women in the world. My husband and I experienced failure month after month, year after year, and still we pressed on. We did this because family is so important to us and we would not stop until we became parents. I learned I can do hard things, and my daughters will learn they can do hard things too. When I face failure and frustrations in motherhood, I remind myself of the obstacles I have overcome and rely on that strength to get me through hard times.

The journey of infertility is treacherous. No one deserves the pain that comes from an inability to get or remain pregnant when that is their deepest desire. The wound of infertility often runs deep. But there is hope. There is a lot we can learn. And we can have tremendous growth which can prepare us to be great parents when that glorious day finally comes.

 

 

 

#startasking How does infertility impact loved ones?

Infertility doesn’t just impact the patient but their entire family and social circle as well. Family relationships can be particularly difficult to navigate after an infertility diagnosis. I asked my mother, Judy Horn, to write a blog post reflecting on how it feels to have a loved one with infertility. She shares her thoughts below. Thanks, Mom, for sharing your story.

– Elizabeth

In the late 1980s, when my daughters were small, I watched a movie on television. The story line was of a family with four daughters. As the story unfolded three of the daughters were either pregnant or had children and it was apparent that the other daughter was struggling with infertility. It was a Lifetime movie, full of drama and at the conclusion had a typical happy ending. I can remember thinking of my girls and hoping that I never had to deal with that situation. For some reason, perhaps a vague premonition of events to come, I never forgot that movie. And so today, nearly thirty years later, I am sitting at my computer trying to find the adequate words to describe what it is like to have a loved one with infertility.

kinder

A Polaroid of Judy with Elizabeth at her kindergarten registration in the early 1980s.

When my daughter Elizabeth finally told me about her struggle with infertility she was a couple of years into it. I can remember immediately thinking that this would be an easy fix. She was working with a doctor and I was pretty confident that they would find a solution and before I knew it she would be pregnant. At the time I had no idea how complicated it would become and how low the success rate is. I can remember waiting for months for information. Because of the nature of this disease and because Elizabeth was like most women dealing with infertility, we didn’t talk much about the process, so, I began searching the internet for any information I could on the subject of infertility.  When I would see or talk to her I would look for any indication that she was or was not pregnant and as the months passed the assurance I had felt before about the “easy fix” began to evaporate. I became frustrated and just wanted to do something, anything that would help, but there was nothing I could really do. At one point I began to feel guilty and wonder if in some way this was my fault, that I had done something during my pregnancy that resulted in Elizabeth’s infertility.

I often worry about saying the wrong thing, about saying something unintentionally that will be hurtful or inappropriate. There is a list of words and phrases not to say to someone dealing with infertility, but sometimes it’s difficult to remember and I know I’ve said things without thinking. When that happens, I feel so bad and I get angry with myself for not getting it right. Once the words are out, there is nothing that can take them back and never the right words to express my regret for speaking them.

I began to feel guilty and wonder if in some way this was my fault.

Eventually, three years ago Elizabeth did become pregnant. We were going away together on a weekend trip and when I stopped by to pick her up, for some reason I had a good feeling she was pregnant. She said nothing about it, but when I had to give her an injection that evening, I was even surer that I was right. The next day we went shopping and I sat while she tried on clothing and enjoyed the fashion show. The good feeling grew as I noted the number of shorts and skirts that had elastic or drawstring waists. Sadly, the good feeling would not last more than a few more hours. Elizabeth had gone for blood work that morning and received a call as we were shopping that her numbers were down and the two little ones that had implanted after IVF were no longer living. We drove back to the hotel in silence, Liz crying quietly and me struggling to concentrate on my driving as the tears blurred my vision. I spent that afternoon watching her sleep, feeling helpless and useless, knowing there was nothing to do but just be there and that seemed incredibly insignificant.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth's miscarriage.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth’s miscarriage.

Several months later Elizabeth had her last embryo transfer. It was unsuccessful. I have five living grandchildren that give so much happiness. I am thankful for them every day. However, I will forever be reminded of Elizabeth’s children and mourn their loss. There is a list that will never end of things that I will miss with them. I will never give them a bath or have the joy of watching them grow, run my fingers through their soft hair, tell them how much I love them or hear their sweet voices. I will always long to know what they would have looked like and I will never forget them.

There are many words I could use to describe the past five years. Just of few of them are disappointment, guilt, worry, regret, loss, love and balance. Balance because I have to balance my feelings about all of this and remember to appreciate the good things and not dwell too much on the sadness. I have much to be thankful for.

Last and most importantly, I love her so much and I am proud. I am so proud of Elizabeth and how she has taken a personal tragedy and made it into something that will help others cope with their own heartaches. In just two years ART of Infertility, an exhibit she created, has helped others tell their stories and deal with their own infertility journeys. It has grown into an organization that educates, raises awareness and provides a creative outlet and a community of support for those experiencing the effects of their own infertility disease. I will never know how many people she has touched with her work or the effect that it will have on them and the lives of others, but I am confident that this legacy she is creating will be long-lasting and a catalyst for positive change for many years to come.