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

#startasking about Parenting after Infertility – Candace’s Story

Today, we’re taking a bit of a risk and giving you a news feed full of stories reflecting on the joys and struggles of parenting after infertility. We wouldn’t normally post so many stories in one day (that’s the risky part). However, when we interview people who have “resolved” their infertility, even if decades before, a theme that comes up time and time again is the long lasting effects of infertility. Having a child, whether through treatment or adoption, means becoming a parent. It’s not a cure for infertility. 

So, we’ve invited several parents after infertility to share their experiences with us today. First up, Candace Wohl of Our Misconception. Candace is an amazing infertility advocate and it was through her sharing her own story on MTV’s True Life, that I was able to really start grieving my own traumatic IVF procedure and subsequent miscarriage. I’ll forever be grateful to her for sharing and am honored to bring you more of her story through our first post of the day. This post does contain an image of a child.

Elizabeth

Parenting After Infertility 

by Candace Wohl

For National Infertility Awareness Week I thought I would expose a raw topic that some of us really do not talk about. We are even more ashamed to mention it. Somewhere tangled and twisted in the kudzu vines of our infertility, we hold it in. Funny how I am so open to talk about everything from my broken lady bits to reproductive injustice but this, THIS topic is hard.

For the first time, I had been asked to share my thoughts on something I am terrified to talk about. The ART of IF wanted to #StartAsking about parenting AFTER infertility. Not the beautiful bouncing baby part, but what people may not know.

It took 7 years before I became a mother through the gift of surrogacy.  I remember waking up at 12:22 am on my first Mother’s Day to the cry of my baby in tears, asking for “momma.” It was the first time I heard it and I felt like I had waited my whole life to hear that one single word. I sat in the rocker for hours that night sobbing tears of joy as I held her while she slept thanking the powers that be that brought us together.

The next day I felt guilty.

There is so much more to peel back and reveal about the aftershock of infertility that tends to happen to the 1 in 8 that finally become moms.  Many think once you get to the other side of the ever evasive Promised Land of Motherhood, that everything, the heartache, the desperation, the loneliness will vanish. When your miracle baby is placed in your arms all is washed clean and the curse is lifted like a passing dark cloud.  For me, I can say that some of this faded but it was still there.

Wohl-Family-0039We openly fundraised and shared our story. My infertility was no secret and our financial infertility was what stood in the way of us having a family.  Strangers, friends and family did everything imaginable to help us. The birth of our daughter was one of hope and beating odds and she was a headline baby. Shortly after our daughter was born, I started feeling an overwhelming sence of pressure. It was all internal, not once provoked by anyone. There was this irrational and totally self-imposed expectation to be the flawless Donna Reed example of motherhood. This is what I have wanted for so long right? I felt like everyone was watching every move I made from how I interact with her to what type of diapers she wore, things like choosing homemade baby food versus jarred, I even stressed over the type of cleaner I would use in the house.

There were so many people who wanted this for us and there are millions, (7.4) who want to be in our shoes.  Infertile guilt sets in. These thoughts play in my head daily:

How can I be frustrated at 3 am when I’m covered in vomit? Someone right now is praying for this.

My kid just pinched the living crap out of another kid at the park, the other mom probably thinks I do not discipline because she is an only child and I am a parent after infertility.  

I feel like a horrible mom for handing over our daughter on a bad day, as soon as my husband comes home from work so I can leave the house for an hour to decompress.

I wanted this so badly and I am failing everyone around me.

These thoughts, this great feeling of social pressure, although I know is self-induced is part of my infertility. I don’t quite fit in with the fertile moms at the playground because my perspective is different. I don’t always fit in with the women who are still working on their first set of double lines, because I do have a child now and I am afraid to share my joy because I was once there and understand the painful uncertainty. It’s a lonely feeling.

For those who know me, I am really positive person.  I’ll take a steamy pile of poo and figure out how to make it into a less-steamy, more gold-like poo-casso. That has not left me. But I am scarred both physically and mentally. The infertility PTSD is there, just repressed now that my whole world was changing. I am able to finally hit the play button on my future which I had felt had been on pause for so long. Still though, that song that was on repeat for so many years titled, “You can’t have a baby because something is wrong with you” still plays in my mind.  With that playing and a new song, “Don’t be anything less than 100% grateful and a perfect mom … this is what you prayed for” it can sometimes be tough to remember that, being human means not being perfect.  It means messing up every once in a while, listening to that voice that says, “Damn, I just washed those sheets.”  Being human means, I/we are capable of feeling all of these emotions, no matter how contradictory, at one time. I am glad ART of IF decided to #StartAsking about Parenting After Infertility, they exposed this other side of me that I thought it best to just hide under my bed of feels.   Although this isn’t the fairytale painting of a picture for this very broad topic of parenting after infertility, I know it is the painting I am supposed to be a part of and I wouldn’t change a single brush-stroke in it.

Candace-Wohl-Family-0051

 

 

Myth: Infertility only Results in Physical, not Emotional, Trauma

by Danielle Bucco

Many people who have not gone through infertility in some form find it hard to think about the effects and implications it can have on a person or couple, both physically and emotionally. In 2007 the National Survey of Fertility Borders indicated that more than 30% of women experience fertility problems and the number is only increasing. With this large number of people dealing with these issues, it is important to understand all the many different ways that fertility problems can affect a person.

When people who have not gone through infertility think about it, most automatically just think of the physical struggles that a person has to deal with. They think about the treatment process and what could be wrong, instead of thinking of the emotional implications that it has on the people who have received an infertility diagnosis. It has been discussed that pregnancy loss can be suitably thought of as a traumatic stressor. When each form of fertility treatment fails it is often experienced profoundly as the literal death of a child. The pain that is experienced is something that people without infertility, find hard to imagine. Couples have such high hopes each time they go through treatment, only to have their hopes completely crushed by a doctor telling them that it hasn’t worked.

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One of the first studies of considering infertility a trauma by Engelhard in 2001 stated that infertility could lead to forms of PTSD (post traumatic stress disorder). A traumatic event is defined as experiencing, witnessing, or learning about the actual or threatened death/injury of themselves or others. This is definitely something that people dealing with infertility have to go through, some even multiple times. Several of these stress issues fade over time but there are more issues than just the stress factor. Anxiety and depression also play a part in the emotional distress of an individual going through infertility and again, many people do not take that into consideration if they have not experienced it themselves.

This myth, that infertility only affects a person physically, is something that people need to understand is not true. When a person deals with infertility it is something that can lead to so many emotional issues as well. Suffering loss after loss, is emotionally draining and many people suffer from anxiety, depression, PTSD, and so much more because of it. The sooner people begin to understand this, the better they are going to be able to help their loved ones through this hard time and give them the support that they need. Everyone experiences loss differently, which means it can sometimes be hard to figure out exactly what that person needs. The most important thing is that they know they have support and are allowed time to grieve in their own way and on their own timeline.