Tag Archives: living child free after infertility

Living with an Invisible Illness

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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

Going the Distance for Infertility Coverage – Reflections on Advocacy Day from Brooke

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Today, Brooke Kingston shares why she travels 2000 miles from home to Washington, D.C. for Advocacy Day each year. Thanks, Brooke, for sharing your story!

Elizabeth

Brooke-in-DC-2015

Brooke after sharing a portion of her story with ART of Infertility during our mini interview sessions before Advocacy Day, 2015.

Two years ago this May, I boarded a plane in Phoenix, Arizona destined for Dulles International Airport in Virginia, a place I’d never been. I picked up my rental car and drove to a home in Sterling, where I would be staying for the next week. I was about to meet someone I’d been online friends with for 3 years, but had never met face to face. Our plans were to get pedicures, eat good food, and spend a day in Washington, D.C. talking to members of Congress.

You’re thinking I’m crazy, right? Maybe a little.

When I think back to the leap of faith I took flying across the country, meeting (and planning to stay with) someone I’d never met and committing to walk the halls of the Capitol, I’m still a bit surprised with myself. I’m a homebody. I hate public speaking. Why would I do something like this? To explain that, I need to back up a little more.

Five years ago this summer, my husband and I were diagnosed with joint fertility issues. We were given a 2% chance of ever conceiving on our own. Having agreed ahead of time that we wouldn’t do IVF, we spent the next year coming to the decision that we would choose a childfree lifestyle as our resolution to infertility. It was the hardest choice we’ll ever make as a married couple, but we made it together and committed ourselves to each other and began to heal.

Part of my healing process is creating. I took up new crafts and converted what would have been the nursery into an office and craft room. I learned to knit and returned to painting, something I’d enjoyed in high school. I baked and decorated cookies and cakes. I dabbled in photography and sewing. My Pinterest boards grew exponentially. When our first nephew was born in the summer of 2014, I learned to quilt and made 7 quilts in as many months, gifting them with love to friends and family. I poured myself in creating to fill the void.

The fifth quilt Brooke created.

The fifth quilt Brooke created.

The other part of my healing process is taking action. Infertility left me feeling helpless, and then angry at that feeling of powerlessness. To face that anger, as well as to find community and support, I became involved with RESOLVE: The National Infertility Association. I started as a support group attendee shortly after our diagnosis and eventually became a group leader. I became involved in fundraising through the Arizona Walk of Hope, and eventually became the chair of the event. Later, I would become an Ambassador and assume the responsibility of being a positive face of RESOLVE in the community.

Brooke with fellow Advocacy Day attendees at the welcome reception in 2015.

Brooke with fellow Advocacy Day attendees at the welcome reception in 2015.

In the midst of this volunteer work, I heard about Advocacy Day. In 2013, I remember posting on Facebook that I would be there in 2014. I didn’t know what all was involved, but that was my goal, and I would not fail. Those were my words: “I will not fail.” I spent the next year saving for airfare. A friend who I’d met through infertility message boards and become close with – thanks to our spectacularly matched wit and diagnoses – offered her home as my place to stay and agreed to join me at the Capitol. I was beyond excited and nervous, but on May 7th, 2014, the day of my first Advocacy Day, I achieved the goal I’d made over a year earlier.

Brooke at Senator McCain's office during Advocacy Day 2014.

Brooke at Senator McCain’s office during Advocacy Day 2014.

It’s hard to describe the exact feeling of being at Advocacy Day. It’s awe-inspiring: from meeting the staff of RESOLVE, to hearing the empowering speeches of the event chairs at the morning training, to being in the Capitol building amidst the hustle and bustle of staffers and trams and security points. It’s intimidating sitting in front of a congressional staffer (most of whom were younger than me – you kind of want to ask if their parents know where they are), telling them you’re there because you’re infertile and you want their boss to support legislation that will make life better for people like you. It can be difficult to remember all the statements you carefully rehearsed and the facts about the bills you memorized when you’re nervous and your mouth feels dry and your palms are sweaty. Their political philosophy may be wildly different and you may feel like you’re talking to a wall.

But your voice is HEARD.

Whether my congressperson agrees with me or not, my voice was heard, and it was heard on behalf of 7.3 million Americans who weren’t there in that room that day. That’s an incredible sense of accomplishment. Even if they don’t agree to co-sponsor a bill, when we tell them that we’re there with a group of over 150 people from all over the country, that makes an impact. That tells them that we are a force, and that we matter. That’s the incredible feeling that drives me to attend Advocacy Day, to set aside my fear of public speaking for the greater good of my community. This May will be my third consecutive year attending, and I have no plans to quit.

Brooke and her online turned in-real-life friend, getting pedicures before Advocacy Day 2015.

Brooke and her online turned in-real-life friend getting pedicures before Advocacy Day 2015.

As for the friend I stayed with that first year, I’m doing that again, too. We’ve become the best of friends, and this is something we’re committed to doing together, along with the growing number of advocates we meet each year. Advocacy isn’t only about the message we deliver directly to congress. It’s about our community and how we foster it and make the environment better for those who can’t speak out. It’s about being with other people who understand the emotional complexity of the disease and using those emotions to drive action.

It’s about taking a leap of faith and believing that you can create a difference, start a conversation, and make things better for others.

Please consider joining Brooke at Advocacy Day in Washington, D.C. on May 11 this year. You can learn about how to get involved at resolve.org.