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

Nature, Nurture and storytelling through the art of Jen Burdess

Awhile back, Maria and I came across a news story about an infertility art exhibit, One in Eight, that ran at the Ice Cube Gallery in Denver during National Infertility Awareness Week this year. So, naturally we had to reach out to the artists, Jen Burdess and Anne Hallam. We’re happy that Jen is our guest blogger today! Below, she shares how and why she created her artwork and what the experience of sharing it with others has been like for her. Thank you, Jen, for sharing your story!
-Elizabeth

A detail image of Nature, Nurture, by Jen Burdess. The piece was on display in the exhibit, One in Eight, in Denver in April and May, 2016.

A detail image of Nature, Nurture, by Jen Burdess. The piece was on display in the exhibit, One in Eight, in Denver in April and May, 2016.

The inspiration for Nature, Nurture came from the implications of the medical diagnosis of infertility I received three years ago. The diagnosis attacked my identity as a woman. In an effort to reconcile those feelings of loss, Nature, Nurture was created. Though my diagnosis will never change, this work has given me some sort of closure to a period in my life of uncertainty and anxiety. Nature, Nurture consists of three linoleum cuts that were inspired by the anatomy of the breast. They were then hand printed. Each lino cut was printed 136 times. This number corresponds to the rate of infertility in America. One in eight couples will suffer from infertility. 17 out the 136 prints is colored red to represent those with infertility. The lino cuts are printed on used breast pads. The breast pads were chosen as a representation of how far I have come. Without ART (assisted reproductive technology), I would not have had my beautiful son. It only seems right then to use art to record my journey.

The breast pads stretched over 30 feet of wall and was 12 feet high in some places. It was important to me that work was large. I wanted it feel large and imposing, something that could not be ignored. I chose to carve three different designs and printed each in their own color to represent that there isn’t just one cause of infertility or one type of person that it affects. There are many different reasons. Some women never find out the cause. I was diagnosed with stage IV endometriosis. Stage IV indicates that the endometriosis has affected your ovaries and has caused cysts on them. It had also ruined my Fallopian tubes and had caused adhesions and scarring throughout my pelvic cavity. While it was devastating to know the extent of the damage, it also gave me some closure. I had a very clear cut diagnosis. It was very cathartic to devote the time and patience it took to print over 400 breast pads. It was a meditative process and helped me to process the emotions that come along with the diagnosis of infertility.

one-in-8

Nature, Nurture by Jen Burdess.

The response I received from the show was overwhelming. I wasn’t sure how everything was going to pan out. I knew I wanted to open up about my experience did not know what that really meant. How would I feel about talking with strangers about this? Could I handle criticism for my choices? I just wasn’t sure. We had a few events planned during the show. One was being part of a gallery tour. We had four groups of people cycle through the gallery. The gallery was split in two. My work on one side and some formalist artists on the other side. Their work was all about design and color. The contents couldn’t have been any more different. The tour groups went from chatty and happy to somber and silent as I started to tell my story. People thanked me for sharing something so personal and many women shared their stories with me. Simply by speaking up, perfect strangers told me their very personal stories of heartache and the many different ways they had built their families.

one in eight show

Sharing my story was difficult to do but every time I told it, it became a little easier. Infertility is a lonely place. It is very isolating. It calls into question your identity as a woman. From a young age girls play at being mothers. Society expects women to take up this role. Those who choose not to have children can be judged very harshly. Women becoming mothers is an ingrained expectation. That expectation, coupled with a desire to become a mother, is a heavy burden for those struggling with infertility.

 

Advocacy Day Reflections from Jennifer

A few weeks ago I decide to take a last minute trip to Columbus, OH. While there, I was able to interview Jennifer. Jennifer was diagnosed with PCOS and Endometriosis and dealt with years of infertility before a successful IUI and the birth of her daughter, Kathryn. For the past few years, Jennifer and her husband have been trying IUIs again. Below, Jennifer reflects on Advocacy Day and why she makes the trip to Washington, D.C. each year. Thanks, Jennifer, for sharing your story.

Elizabeth

“At first I went because three of my friends were going. I was like, oh, it’s going to be a fun girls trip. I think sometimes I’m a fairly cynical person so I don’t necessarily always think that our voice is heard and that the senator really cares, but going in there and telling them what we need, what we want, and that there is a need for infertility coverage and the adoption credit, I felt so empowered. In control almost. Like I could take back control and I didn’t expect to feel that. It was a lot more emotional than I thought it would be. I think I probably did cry at some point on that day and I didn’t expect that at all. I really didn’t. I’m always sort of using humor as my natural defense and sort of hide stuff so I was really shocked by how emotional I was that first Advocacy Day.”

Jennifer-infertility-advocacy

“One of the things that I came away with the first time I went to Advocacy Day that never even entered my mind was that if, in twenty years, my daughter is infertile for whatever reason, whether it’s her, or her spouse, or whatever, that I could do this for her. It hit me like a ton of bricks. I could fight for her so that she never has to know this pain. So that’s why I keep doing it. More than for myself or for anything.”

“I thought I was going to make a difference for myself. That I was doing it because of my journey and what I went through. I just started thinking about Kathryn and if anything I do on that day can make it easier for her, if she HAS to walk this path, then I’ll go every year, every day, forever.”

 

Friday News Round Up – March 11

Just a few stories that caught our eye this week.

Screen Shot 2016-03-11 at 5.03.34 PMFirst Uterus Transplant in U.S. has Failed.

The New York Times

We were saddened to hear this news but glad that the clinical trial will continue.

 

Lena Dunham

Lena Dunham

Lena Dunham hospitalized, will undergo surgery. 

CNN 

We appreciate the awareness that Lena is creating by being open about her reproductive health and hope she is recovering well.

 

Screen Shot 2016-03-11 at 5.10.49 PMScientists find cause of recurrent miscarriages.

BBC World Service

Advances in technology have decreased the cost of research, allowing scientists to discover that stem cells play a roll in recurrent miscarriages. Listen to this audio to hear about two studies that will be done to try to prevent miscarriage.

Endometriosis through Poetry and Science

It’s Endometriosis Awareness Month. Endometriosis is one of several factors contributing to my own infertility. Today, we’re sharing info on endometriosis via poetry by Jenny Rough and through scientific facts from Endo Warriors

Elizabeth

In the Bathroom by Jenny Rough

What is Endometriosis?

(Sourced from endowarriorssupport.com)

Endometriosis is a painful condition that occurs when tissue similar to the endometrium (the lining of the uterus) implants itself outside of the uterus. This results in the formation of cysts. scarring, and inflammation; all of which can cause chronic pain, infertility, adhesions, and bladder and bowel complications.

Endometriosis is most commonly found on the exterior of the uterus, fallopian tubes, ovaries, bladder, and pelvic floor. Endometriosis can also occur — although It is less common — on the bowel and sciatic region. In extremely rare cases endometriosis can be found growing on the liver, diaphragm, lungs, brain and central nervous system.

Blausen_0349_Endometriosis

Source, Wikipedia.

Common Symptoms Include:

  • Painful menstrual cramps
  • Pain during ovulation
  • Irregular or heavy menses
  • Painful bowel movements during menstruation
  • Urinary pain during menses
  • Chronic pain lower back pain
  • Spotting or bleeding between menstrual periods
  • Changes in bowel habits during menstruation
  • Abdominal bloating
  • Chronic pelvic pain
  • Infertility or difficulty conceiving
  • Dyspareunia: Pain during and after intercourse

Women with endometriosis may also suffer from higher rates of allergies, yeast infections, chronic fatigue, fibromyalgiamullerian anomaliesinterstitial cystitisadenomyosisthyroid diseaseCrohn’s diseaselupus, multiple sclerosis, and other autoimmune diseases; as well as increased rates of ovarian cancer, non-Hodgkin’s lymphoma and brain cancer.

My Infertility Wardrobe – Reflections from Elizabeth

My mother once told me that she was so excited when she was pregnant with me, in part, because it meant she got to buy new clothes. Her budget for clothing was tight but a changing body meant she’d have no choice but to expand her wardrobe. My relationship with clothing and fertility has been a little more complicated.

I knew, long before I started trying to conceive, or received my diagnosis of Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve, that when I got pregnant, I was going to show off my growing belly. No flowing tops with empire-waists for me! I was going to wear form fitting dresses, showing off every curve.

Once I went off birth control, I was reluctant to buy new clothes. It was only a matter of time before I wouldn’t be able to fit into them, right? I needed to save my money for trips to Motherhood Maternity and shopping A Pea in the Pod, and the maternity line of stores like GAP online.

Months turned to years and my clothes were getting tattered and faded. It was a stand off of sorts. I refused to give in and buy something new. Eventually, just after beginning a treatment course of inter-uterine inseminations with a hybrid of oral and injectable hormones, I needed a new winter coat.

My mother-in-law, Beverly, and I took a trip to TJ Maxx on a Saturday afternoon. I picked out two. One was Calvin Klein. Long, black, full of down, with faux fur framing my face on the detachable hood. The other, an Anne Klein of bright red wool. Beverly, an excellent shopping partner because of her excitability over a fantastic find, gushed about how cute it was and asked, “Oh! Don’t you hope you don’t get pregnant right away so you can wear it a little while?”

I didn’t care. The coat would fit after my pregnancy, or it wouldn’t, but at least I’d have a baby in my arms.

In the red coat, surrounded by children on a hay ride on our friends' family farm.

In the red coat, surrounded by children on a hay ride on our friends’ family farm.

Around that time, I decided to readjust my perspective and started using clothes as my consolation prize for not being pregnant each month. With the arrival of each new cycle, the sure sign that treatment had once again been unsuccessful and the prospect of having to buy maternity clothes was delayed for another month, I would head off to the Limited, or scour the racks at Marshall’s after appointments with the reproductive endocrinologist. I bought sweaters, camisoles, tops, but never bottoms, still holding on to the possibility that it wouldn’t be long before I was pregnant and I would have difficulty zipping and buttoning them.

My dresser drawers started overflowing and I had no choice but to start moving clothes into the dresser in the guest room that was supposed to become a nursery.

At Advocacy Day in 2014 wearing clothes purchased specifically for the occasion.

At Advocacy Day in 2014 wearing clothes purchased specifically for the occasion.

In March of 2013, we moved on to IVF. I had originally hoped to do it in February, just before 35th birthday. I liked the idea of using 34 year-old eggs to create my embryos. Everyone knows things go downhill after 35, right? Unfortunately, since I now live in the world of infertility, I know that things can go downhill at any age.

Our IVF cycle resulted in three, grade 5AA blastocysts. They were high quality, hatched, and ready to implant and become my children. They were beautiful. We transferred two in May and waited to find out if they’d implanted meaning that I was finally, after four years of dealing with infertility, pregnant.

On the night before my beta, after we’d had dinner and I’d taken the dog for a walk, I tested. I seriously wasn’t expecting anything. The words, “It’s negative” were already coming out of my mouth when I realize it wasn’t. Positive. The line wasn’t very dark but it was there. My husband and I were all smiles and I made some comment about being his pregnant wife. Still, we were cautiously optimistic. We knew the blood test the next day would give us a better indication of what to expect.

The next morning, I saw a rainbow on my way to have my blood drawn. That had to be a good sign. The nurse called with my numbers a bit later. At 30, they weren’t where I wanted to be but I was indeed pregnant.  Suddenly, I didn’t hate the pregnant women I passed in the hall at work. I was one of them. It was exciting but also a complete identity crisis. I was fully immersed in the infertility world at that point and the thought of switching gears and becoming a parent were daunting. Still, I smiled when I thought of raising my child alongside my best friend’s daughter who would be just a bit older. Summers at the lake, sleepovers. After years of being left behind by friends as they moved into parenthood, I’d finally be moving forward and joining them.

On the day of beta number two, my mom and I were shopping in Metro Detroit. I needed some summer clothes and took care to choose items that, as my mother-in-law had said about the red coat, I’d be able to wear a little while. At Nordstrom, I fell in love with a light-weight tweed skirt that, unfortunately for me, a newly pregnant woman, fit perfectly. There was no give, meaning it wouldn’t fit long enough to make it to the “yes” hook in my fitting room.

I paid for my items, we had some lunch, and made our way to an antique store. It was in the parking lot there that I got the news. My beta had gone down. The pregnancy was not viable. I emailed my husband the message, “No more shots.”

I thought I could hold it together but I couldn’t, we hit the highway to head back to the hotel. All I could think was, “I should have bought the skirt”, like doing so would have guaranteed that my pregnancy would have continued. For a moment I panicked and my mom and I considered turning around and going back to Nordstrom. We didn’t.

With my husband on our "IVF didn't work so we're taking a vacation" trip. I bought the hat at the resort gift shop after forgetting mine at home.

With my husband on our “IVF didn’t work so we’re taking a vacation” trip. I bought the hat at the resort gift shop after forgetting mine at home.

After my early miscarriage, that skirt haunted me. I looked for it on repeat trips to the mall and it wasn’t there. Months passed and my husband, Beverly, and I were visiting my nieces in Minnesota for their birthdays. We’d been at the Mall of America for hours with a trip to the aquarium, amusement park, the movie theater, and more. The girls were anxious to get back to the hotel to play with their new birthday toys but I wanted to try to take advantage of Minnesota’s tax-free clothing. I said good bye and I’ll see you soon as the rest of my family boarded the elevator to find the shuttle back to our room. I didn’t have much time, but I headed into Nordstrom Rack.

There it was. The skirt. I needed some closure. I took it to the fitting room, this skirt that I hadn’t been able to get out of my mind since the day of my miscarriage. The skirt that I passed up because I was pregnant, then wasn’t. My heart was racing as I put it on and zipped it up. I looked at myself in the mirror and was surprised to see that it wasn’t as fantastic as I had remembered. Relief rushed over me.

Since then, we unsuccessfully transferred our last embryo. We’ve moved on to trying to regroup. To find ourselves after more than half a decade of the turmoil that comes along with an infertility diagnosis. In addition to regular therapy, I’ve indulged in a little too much retail therapy.  My recent splurge (a great deal at Nordstrom Rack, yet still not cheap), a Burberry dress. Not because it’s Burberry but because the fabric feels amazing and it’s in a style that I’ve always wanted, but I’ve never before been able to find in proportions that fit me right. It’s hanging in my closet, with the tags still on. I go back and forth between thinking I should return it and imagining myself wearing it to present about the ART of Infertility at an upcoming medical humanities conference.

The Burberry dress. It's nowhere near that short on me!

The Burberry dress. It’s nowhere near that short on me!

Click here to vote on whether I should return or keep the dress.

I’m not yet sure if my journey will take me to a life living child free or to parenthood. I imagine both scenarios and there’s a wardrobe that goes along with each. In one, there’s shopping without the worry of my newly purchased pants suddenly not fitting, neatly folding clothes and then doing my best to cram them into already over-filled suitcases for more travel with ART of IF, carefully chosen outfits for business meetings, a variety of shoes, belts, and jewelry for accessorizing.

In the other, there are also the shoulders of my sweaters soaked with baby drool, the hem of my skirt being tugged by the tiny hand of a son or daughter, urging my attention to his or her level. There’s me in the stands at a ball game in the rain, wearing a wind resistant parka and, eventually, a trip to a boutique to purchase a mother-of-the-bride, or groom, dress.

I don’t imagine that one wardrobe is better than the other. I believe I can be happy wearing either one. But will one make me happier? Feel more fulfilled? More at peace? I’m not sure yet. So, I’ll take this time to work on re-weaving the fabric of my life that’s been worn thin over the past six and a half years, hoping that I’ll eventually know how to cut it up and stitch it back together into something beautiful and new.