Tag Archives: Endometriosis

A Prayer for the Needed Time-Machine

08 Wednesday Nov 2017

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IMG_5221God who operates beyond time and space, would you mind transforming me back to one year ago this afternoon?

Would you send me back to a time when hope still pushed aside the climate of despair? A time when I didn’t know death’s frigid grasp so well… a time when my body hadn’t yet become companions with various types of pain… a time when we stood on the edge of a possibility which would have brought prosperity for more of my neighbors and a time when hate was not so loud.

Where is this time machine, God? Maybe I would have made some different decisions, spent more time with loved ones, cared for myself in new ways.

I know we cannot travel back, and I know forward through the tunnel is the only path to journey. So give me the peace and strength as the suffocating shadows swallow me as I drive this stretch of road.

And as I reemerge from the tunnels, may your sunlight warm my soul again.

Amen.

 

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A Prayer for the Flare

07 Monday Aug 2017

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For my friends in the “Spoonie,” or chronic illness, community…

God who rides the roller coaster of life with us,
There are times we endure a flare of our subpar health.

Sometimes the flare lasts a day or an hour.
But during that time we experience our own agony-
Our own hell on earth.

Twinges and spasms and aches and overcoming pains keep us silent and still
When all we want to do is move.

Just last night our bodies were cooperating,
And today they revolt against us.

God, our bodies have driven our lives to the land of unpredictability.
We no longer have “spoons” or battery power or energy to keep moving throughout this day-
But we’ll keep pushing as long as we need.

So we turn to you.

If you can refill our cup so that we feel strong again, fill the cup.
If you can rearrange our schedule so that we don’t feel guilty about resting, rearrange the schedule with a touch of your grace.
If all you can do is sit with us in our pain, we are grateful for your presence.

We look forward to the time when our batteries are at 100% again and we can move about our days.

Amen.

Today, I Persisted

08 Wednesday Mar 2017

Posted by in Current Events, Health, Pop, Religion, Social Justice

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img_7961About a month ago, in the midst of my horrific pain, I wrote most of this blog post.

Today, bits of the pain still linger, but I feel much better already. Yet reading this which I wrote when I felt so much less hopeless makes me realize how far I’ve come and reminds me of my persistence and resilience.

And so, on this International Women’s Day, I share with you.

At this point of my life, I needed to hear he word “persist” over and over and over again.

Thanks to the resilience of U.S. Senator Elizabeth Warren, words written by Corretta Scott King were brought alive again in order to protect our Union.

Of course, like most women even in the twenty-first century, we are shushed, told our opinion does not matter, or ignored altogether.

I try to acknowledge this over and over. But sometimes, I’m not privileged. Sometimes, I’m muddling through life with a belly full of ache and a energy system that is zapped. My skin color is privileged, but my insides ache and hold me back.

Once again, I’m struggling with endometriosis.

I’ve learned well how to push through the pain to achieve what I need to. But sometimes it’s just not enough to barely make it through to survive. I work, but I’m not fully living.

When I read all of the sexism and misogyny that’s happening in our country and world, and I see what friends have and do experience, it’s time to claim that we deserve more than the crumbs under the table. We deserve to have health and food and equality. We deserve for our voices to be heard.

And at a time when my pelvis aches and my aggravation increases daily with the dismissal and silencing of women, hearing the word “persistence” and the stories to go along with the word is refreshing.

We need to hear the stories of our sisters who worked for suffrage. We need not only to listen to the stories of our sisters of color, transgender sisters, and lesbian sister, but acknowledge the additional hurdles they have overcome. We need to tell each other our tales and not dismiss what another woman says because we haven’t experienced the same.

I needed the tenacity of Elizabeth Warren today. I need the enduring words of Corretta Scott King. I need to see Malala Yousafzai rising from her injuries and advocating for women all over the world. I still need to see the presence of Hillary in public and private because- even after all of the criticisms and losses, she still continues on. I need the stories of the women in Scripture who persisted: the Syrophoenician woman, the woman with the hemorrhage, Tamar, Vashti, Esther, and more. And I need to hear the stories of my endosisters who continue on one procedure to the next but never giving up.

The more we see women pushing and pushing beyond the boundaries of “no” and “maybe later” to “yes” and rising from the ashes of pain and failure and sexism, the faster we will heal in body, mind, and soul.

 

Ash Wednesday and Human Fragility

02 Thursday Mar 2017

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imageToday, I was reminded of my fragility.

It didn’t happen at an Ash Wednesday service.  I wish I could have led one today, immersing my thumb in oil and ashes, looking into the eyes of fellow humans, and reminding them that we come from dust and we will head back there again later in our lives.

Instead, I got my own Ash Wednesday lesson in the form of pain, shots, and a nod to my human frailness from a nurse practitioner.

As I’ve mentioned on this blog a few times recently, I had surgery for my endometriosis.  While I was expecting the recover to go much like it did last time (SWIFT!), unfortunately, the amount of endometriosis and adhesions were greater so more tissue needed to be removed.  That usually means that recovery will reflect the heightened intensity of my endometriosis and what needed to be done during the surgery.

I didn’t return to work on Tuesday.  The pain was bad.  I had a low-grade fever.  And because of all of the discomfort, I met with the nurse practitioner in at the doctor’s office.  Tarodol shot #1 happend on Tuesday, but it didn’t help much.

Sleep was restless, but I was going to be a delusional hero and push through.  Even as late as Wednesday morning, I was intending to go to the Ash Wednesday service.  Earlier in the day, I was still in pain, having problems sleeping and then needing to sleep.  I called back into the doctor for a third day in a row.  They urged me to come back in for my second Tarodol shot in two days for the pain.

While in the office, I saw the nurse practitioner.  Reflecting on our conversation from Tuesday, she noted that I needed to take the extra time to rest.  “For the first surgery, taking one week off to recover makes sense.  For your twenty-fifth surgery (she meant third), you need a couple of weeks.”

Noooooooooooooo!

Laparoscopic surgeries for endometriosis aren’t like knee or shoulder surgeries.  You don’t have wraps or slings or crutches.  Under my shirts and comfy stretch drawstring pants are three fresh scars.  That’s all I see, and others don’t see any of that.  So I don’t look that bad.  And I still don’t know what my insides looked like during the surgery.  I’ll see pictures next week.  In the meantime, I just see three healing scars.  And what I forget is that I may have healed well on the outside, but my internal cells, tissue, and organs are trying to achieve full restoration. .

I look back at my previous laparoscopic experiences.  After my first laparoscopic surgery for endometriosis at the age of 30, I had a long weekend to recover.  Thursday was the surgery, and I was back to work on Monday.  Frankly, I wasn’t ready to return to work, but I mastered the art of pushing myself even when I was sick.

For the second surgery at 39, I took a week – maybe a week and a day.  Like the first surgery, I was still stage 2 endometriosis.

This surgery at the age of 43 – We are going on one week and two days.  I’m not 30 anymore, and based on the report of many adhesions, I’m probably beyond stage 2 endometriosis (the stage diagnosed during the first two surgeries).

Thankfully, my wonderful ecumenical colleagues in ministry were able to lead the service tonight without my presence.  This came in the form of a group email giving me grace and the permission to rest.

Ash Wednesday in pain.  And so I thought to myself out loud in a Tweet:

My pain and my inability to live fully on Ash Wednesday were more symbolic than any ash could give me.  I’m limited.  I’m mortal.  I’m fragile.  I can’t keep going the way I normally do right now because my human body is healing.  I need help.  God knows this.  Other humans know this.

Why can’t I accept this?

Sigh.

Into the Wilderness Once Again

28 Tuesday Feb 2017

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18304958986_4d0dd2e448_k-2In recent weeks, I had an endometriosis flare-up.

Those of us who have struggled with this particular illness find ourselves in great pain. I’m the type of person who thinks I know fairly well how to deal with this particular type pain and work through it.  With Advil and ice packs as my best friends, I continued to place work as a top priority and kept moving forward the best I could.

But just like the rest of humans on this earth, I am given finite energy.  Unfortunately, all of the friend-time outside of work as well extracurricular activities in which I would like to participate take a back seat as I only had energy to give to work and healing while tending to my flare.

While sometimes ice and Advil are enough to get over flares, this time it wasn’t sufficient.  The pain increased to pretty much all day, every day.

Growing disappointment filled my heart with shadows, and I realized I was back in the wilderness that I had experienced a couple of times before.

I resigned myself to the next steps of what was necessary to remedy the issue.  After weeks of intense pain and having a minimal life outside of work, I escalated the matter and scheduled another surgery.  Thinking about an upcoming surgery distracted my mind.  Will I get sick after the procedure?  Will there be any complications?  Will I have similar challenges as my other two laparoscopic procedures (which I had in 2003 and 2013)?

Once I had the operation, I was required to rest for at least a week.  Granted, the first couple of days I slept quite a bit and didn’t feel once ounce of guilt.  Then the third and fourth and fifth days hit. My spirit yearned to get up and go but my flesh was still weak and healing.  The contradictory nature of my body and soul made me feel guilty.  I should be doing more, I would think to myself.  But my body is human, and patience and grace is something of which I needed to remind myself as I healed.

My recent time in exile reminded me how much I hate hate hate the wilderness – the time in which all of us must face and even admit our fragility and weaknesses.  Lying on the couch and in bed stirred me to wish even more that I was perfect in body, mind, and soul.  Knowing that friends were able to live full lives while I rested in bed frustrated my extroverted spirit.

And yes – I was tempted to get up and do more.  I was tempted to become tough on myself for being in the wilderness again.

But everyone ends up in the wilderness every once in a while, I tried to remind myself.  Even Jesus, the one who was considered sinless or perfect by some, found himself in exile.

I am grateful that every first Sunday in Lent, the Gospel reading is always Jesus heading into the wilderness.  Granted, the story sounds a bit different in Matthew, Mark, and Luke.  But hearing about Jesus’ challenges in the wilderness gives us strength.  It helps to know that Jesus was in the wilderness like all of us have been at various times in our lives.  Besides the day of his death, Jesus’ time in the wilderness was some of his most challenging life moments.  And hearing the story over and over and seeing someone come out of the wilderness with a few additional emotional scars but stronger than ever soothes our hurting souls.

So that’s why I write about my times in the wilderness and speak about my endometriosis: our exile stories need to be told and heard.  Even if your life challenges and your wilderness is different than mine, maybe we all won’t feel so alone.  Maybe someone will feel that you can get through the pain.  Maybe someone will schedule the surgery they’ve put off for months now even if you’re afraid.  Maybe someone will leap into a new adventure in life after feeling stuck for months.  Or maybe we will all remind ourselves to embody grace and patience so that our time in exile is more bearable.

I’ll be back to my normal self in a matter of days.  And just like everyone else – I’m sure I haven’t seen the last of my time in the wilderness.  I’ll find myself back there a few more years down the road.  But if we all keep talking about our times in the exile and encourage and comfort one another in our times of trial, then we will find our strength and resilience and move into a future with hope.

 

The Struggle with Grace and Impatience in Healing

26 Sunday Feb 2017

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pexels-photo-27335.jpgFive days ago, I had surgery.

It was the third surgery like this one I’ve had: a laparoscopic operation to remove some of the endometriosis from my pelvis.  Three small incisions were made in my lower abdomen in an effort to get to scope and treat my inside pelvic region.

I never look forward to procedures, but by the time I’ve made the decision to have surgery, I’ve been suffering with pain.  While I’m still working, my life beyond work is minimal.  For someone who is an extrovert like I am, this is not living.

So I had the procedure.  All seemed to have gone well.  But each and every surgery brings worries along with it as well as knowledge of post-surgery living.

In the days following surgery, I’ve noticed a pattern.  The first couple of days, I’m extremely exhausted, and my body is in healing mode.  My days are filled with nap upon nap.  Then I’ll move into the next phase in which I know I’m feeling better.  I can’t do much physically as I’m still very sore.  My body yearns to heal but my spirit wishes I could be among the living again.  My extroverted self is being crushed by the mandatory rest period.

So, besides sleeping, here’s what I’ve done in the past few days:

  • Watched television
  • Watched Netflix
  • Watched HBO Go
  • Watched whatever is On Demand
  • Watched YouTube videos
  • Watched a video I rented from Amazon
  • Watched Jeopardy each night
  • Read many, many articles
  • Tweeted
  • Colored in my Lisa Frank coloring book.

I’ve done a little work here and there as well – from designing some social media posts to making a few phone calls.  Yet I’m exhausted both physically and mentally, so my energy comes in small waves.

I’m not the only young-ish person I know trying to recover from illness or injury.  Friends of mine have been placed on bed rest, and I have this notion that it hasn’t been too much fun for them to rest either. We are “jump into life with both feet” people, and this necessary time off is against our nature.

What we must be reminded of is that the healing process isn’t an overnight thing.  In scripture, we see Jesus healing, and all of a sudden his ailing followers are completely well.  Jesus didn’t ask them to spend a week in bed after he heals them.  Lazarus didn’t take additional time to rest after his resurrection.  The woman with the hemorrhage didn’t need a week to gain back her strength after touching the hem of Jesus.  Their healing was instantaneous.

My healing is not.

In real life, the way Jesus healed is not how realistic recovery works.  When God gives us healing, our responsibility is to rest and follow medical advice as part of the recovery process.

Let’s face it: instant gratification is a drug in our world.  We consider the rest time as a luxury and not a mandate.  When we realize that we can not escape a mandatory rest period with an illness, surgery, or injury, then we often feel guilty.  Our work has always taken top priority – why rest when we should be carrying a normal work load only days after a surgical procedure!

This is when the Sabbath commandment is crucial.  Sabbath is not only about building our relationship with God, but caring for the relationship with ourselves.  Our self-care is needed for us to heal properly so that we can follow God’s call for our lives and work diligently down the road.

I’m trying not to feel guilty about all of the naps I’ve taken in the past few days or zoning out as I color in my Lisa Frank coloring book or rewatching old episodes of Parks and Recreation for the billionth time.  God needs me to take this time right now to build my body as God will need me to work hard a few days and weeks down the road.

On Being a Lily of the Field

20 Monday Feb 2017

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water-lilies-bud-pond-green-99548.jpegI’ve always been the type of person who worries excessively.  This has always been part of my personality from the time I was a small child, and making drastic changes to such an embedded character trait takes time.

I go about my daily business worrying about how well I accomplish things and if I will have all the resources I need for the future.  I worry about the well-being of those I love and what will happen in the future to all of us.  I worry about small things and large things alike.

So when I read a text like Matthew 6:25-34, I want to laugh.  “God, you’re trying to tell me that I shouldn’t worry.  Easier said than done.  Releasing the worry won’t be happening here!”

And then I am faced once again with surgery.  I’ve tried everything I can to avoid surgery, but I must undergo the procedure once again.  For a while, I worried about having to endure this operation once more and did what I could do to avoid it, but there was little I could do.  I need to have it.

I will be on the surgical table in the very near future, so worry clouds my mind.  There is nothing that I can do once I lie down to have surgery except pray, believing that God knows what I will need and care for me in ways that will strengthen my well-being.

During the procedure, I know that I will be like a lily of the field—unable to care for myself in that period of time.  I will be enduring a period in which I am just “being” instead of “doing.”  My dependence will be on God and those working with God to bring about my health.

Most of us do not want to be like lilies of the field.  We want control, and we want solutions right now.  But now and again, life happens, and our time to be like flowers in a field arrives. We come and go with the winds.  We allow the rains to wash upon us.  Neither we can control.  And God wants us to embrace this time so that we can find our well-being again soon.

So I ask for God to take care of me while I am like a lily.  I ask God to heal me so that I can work hard once healing happens.  And like Reinhold Niebuhr’s Serenity Prayer, I ask God to help me always figure out what I can control and what I need to give to God.

This post will be in St. Paul UCC’s March 2017 messenger.

Waiting to Heal

16 Thursday Feb 2017

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teddy-teddy-bear-association-ill-42230The endometriosis has returned.  At least it’s what I think right now.

Next week, I have my third surgery for this disease.  Now, most of the time I’m fine.  And I’m the type of person who works diligently through my pain a it doesn’t stop me from being a productive person.  But eventually I get to the point that I need to have a procedure as the pain reaches a distracting level.

Have I mentioned how much I hate pain – how I would rather endure surgery than experience daily agony?

I’ve written about my experiences with this illness here, here and here.  Of course, I’m always doing what I can do educate others about the illness.  It is believed that ten percent of people with female reproductive parts have endometriosis – and this includes some transgender men.  Many women are told that pain with periods is normal, so women will go years before they are diagnosed.  People like Lena Dunham, Susan Sarandon, and Whoopi Goldberg have had the disease.  It is also believed Hillary Rodham Clinton and Marilyn Monroe suffered with it as well.  While doctors try various pills and medications to treat the illness, it often feels like there are few good treatments besides surgery.  The other treatments I’ve tried were spoiled by the side effects.

While most of my energy is dedicated to work and healing, little time has gone to writing. Which is why I’m giving what I can tonight to my craft and calling as a writer.  In the next few days I hope to write more here about my experiences with endometriosis in the pulpit and as a woman.

I’m very fortunate that I’ve gone years between each of my surgeries – unlike many women.  My hope is that in a few weeks I will be back to my normal self – blooming with energy and gaining momentum to become active again.  This is what happened after the first two surgeries, and I pray that it will happen this third time.  All I want is to feel human once again, to savor the joys of life with friends and find myself outside under the sun instead of on the couch and in bed during free time.

Netflix is nice, but there is so much streaming one wants to experience because there is an entire world to see, hear, and taste.

March Forth… Along with a Million Other Women

04 Tuesday Mar 2014

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march forthToday, March 4th, the United Church of Christ and other denominations ask us to take a stand and march forth in body, mind or soul in an effort to bring justice to our world.

I march for Endometriosis.

Now, some may think this isn’t much of a justice issue.  To many, it’s another health issue to which only half of the population is susceptible.

Isn’t it just another painful period?  Aren’t periods supposed to be painful?

No.

Wait, didn’t God say that this is a punishment for Eve eating the forbidden fruit?

No.

Endometriosis is an illness when the lining that is usually found in the inside the uterus migrates  outside of the womb.  It can be found on the outside surface of the uterus, the Fallopian tubes and the ovaries not to mention the bladder, bowels and a variety of other organs.  The tissue has been found on the brain and in the lungs.

There is so much mystery surrounding Endometriosis.  They’re not sure if it’s genetic or if tissue is regurgitated into the abdominal cavity.  There is nothing we can do to prevent the disease from starting.

So besides not knowing how it begins, there is no know cure.  Doctors will prescribe birth control pills to control the growth.  If the pain continues, a laparoscopy is performed.  This is the only way Endometriosis is truly confirmed in a woman.  While they are performing the minimally invasive surgery, they will remove much of the tissue growing outside of the uterus.  Often, this will alleviate the pain, but for many of us, the growth begins again, and the pain intensifies.  Doctors will also prescribe Lupron, a drug that will place a woman into menopause for a few months.  The hope is that the Endometriosis is greatly reduced when the periods return.

Hormones have many side affects and no one really wants to have surgery.  I can tell you that it’s difficult to choose between the two.  Yet knowing how hormones wreak havoc on my body, I tend to choose surgery when the pain is consistently intolerable.

I’ve had two laparoscopic surgeries: one in 2003 (when I was diagnosed) and one in 2013.  I feel fortunate that I went over nine years without another surgery.  I seriously doubt that nine years will go by before my next one.

It’s incredible to see this great fight over the coverage of birth control when people with Endometriosis find it as a temporary solution.  Unfortunately, birth control is a “sinful” substance to many, but for a multitude of others, it returns their lives.  It should be widely available for women to use for a number of reasons.

There is one other thing: not all doctors are willing to face Endometriosis.  I’ve had a couple of wonderful physicians who were willing to take my condition seriously.  But women are told that extremely painful periods are normal.  By gynecologists.  And then they are told pregnancy and hysterectomies will cure the disease.  Yet nothing is curative.

So it’s time to stand up, to march and to let women know that painful periods aren’t what we as women should be experiencing.  It’s time to be like the woman with the hemorrhage in Mark 5 and advocate for ourselves.  We’re not willing to have these pains decade after decade when it could have been diagnosed in our teens or early 20’s.  We’re not willing to stand by as this disease takes over our bodies and robs us of our lives.  We’re not willing to let this tissue grow like weeds so that we experience defeating infertility.  It’s time to use everything we can and let our health care providers know when our body isn’t right.

And it’s time for us to stand up to our legislators and let them know to allocate more money in funding for research.

As we march forth today – most of us virtually – let us support one another in our common pain.  Let us support those we love whose pain overcomes their lives.  And let us stand up to the powers that be who can make fiscal decisions, making this disease a thing of the past.

I plan on sending a to my senators and congressional leaders.  Others will be marching in Washington D.C. and other cities all over the world on March 13.  What will you do?

Find contact information for elected officials in the United States HERE.  For more information on the Million Women March for Endometriosis, check out the website: http://www.millionwomenmarch2014.org/.

Chronic Illness in the Body of Christ

22 Friday Feb 2013

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As many of you know, I struggle with endometriosis.  It’s an illness that causes endometrial tissue to grow outside of the uterus.  The health issue causes me to occasionally feel extreme pain around my cycle, extra fatigue and stomach discomfort.

I’ve learned how to live in pain and exhaustion.  I’ve done what I can to improve my condition including having surgery and changing my diet just so that my pain and discomfort will be minimal.

But so many people have conditions that are painful in very different ways or even completely debilitating.  Some of these include fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus, irritable bowel syndrome, Crohn’s disease – among so many others.

In the past number of months, I’ve connected with many women who have endometriosis and, often, other chronic health issues.  Many work but have very limited lives beyond work.  Some can’t work at all.  There are a number of people in this country who have no health insurance.  Those who are able to see doctors are often given excuses that “it’s in your head.”  I’ve heard that many women with endometriosis are told that incredible pains are “normal” (but I’ve never experienced this myself).  Each month, these women live at a pain level of ten.  Eventually, when the pain gets bad enough, they have an exploratory surgery to see what is happening.   At that point, they are told they are infertile or need a colon resection surgery because no one listened to them years earlier.

Many chronic illnesses take a while to be diagnosed and treated.  Sometimes, there are no treatments for the aches and exhaustion of some of these health issues.  How frustrating it is to be told that there’s no solution to exhaustion and pain, except for cognitive therapy and antidepressants!

Frustration does not stop there.  They work and parent even though their bodies feel as if they are to fall apart at any moment.  If they can’t work because of the extent of their illness, many people with these chronic illnesses are told by society that they are lazy and don’t want to work.  Their pain is not believed because it doesn’t show on the outside of their bodies.  I’ve  heard one person with one chronic illness tell others that their health problem is not a “real” illness.

Because we are all part of the Body of Christ, we all suffer from endometriosis, fibromyalgia, rheumatoid arthritis and the entire list of autoimmune and chronic diseases.  Because we are one in humanity and one in Christ’s body, we also all suffer from diseases like Parkinson’s, MS, cancer, AIDS.  When one part of our body hurts, our whole body hurts.

So when someone  with a chronic illness is disregarded, they do not receive the dignity they deserve.  They feel even less dignity than they did when they kept their illness to themselves.

Unless we walk in their shoes, we can not understand their pain, their slowness in movement, their foggy minds and their fatigue.

As people of faith, what can we do to give dignity to our sisters and brothers who hurt?  Of course we can pray for them and with them.  We can offer scriptures, like Psalm 6, Psalm 22, Psalm 23 or Psalm 38.

But people with chronic health issues will need more than a few Bible verses handed to them.  They yearn to feel human, desire to reclaim their dignity and want to be heard.

When each and every day you wake up with another symptom or feeling overwhelming pain, you feel like Job.  You may feel that God has deserted them.  When you can’t get your health problems resolved, you feel like the woman with the hemorrhage.

So as people of faith, how can we be a support to them when their doctors and friends don’t even believe them?  Frankly, it starts with listening and praying with them so they know that someone else is cheering for their healing.  It starts with helping them sort their feelings, giving them a space to vent and cry.  It helps if you can go to their appointments with them or pick up their medicines for them – if they ask.  It begins with helping them reclaim their dignity as made in God’s image.  Our care for them includes spending time with them in fellowship; many of them can’t leave their homes or have limited energy for fun activities.  They find isolation in their illness.

And it begs for us to be advocates for their health in broken health care systems.

I don’t think God gave me the endometriosis pain “for a reason.”  God experiences pain when we do, and I don’t think of pain as punishment or a method of teaching.  But I believe God is calling all of us – those who have experienced pain and those completely healthy – to use our voices and stand with those who hurt, knowing that we aren’t alone on our journeys.