Invisible Illness Awareness Week is September 28 – October 4

This post is from the Rest Ministries Invisible Illness Week website (http://invisibleillnessweek.com/)

What is your invisible fight?

Invisible Illness Awareness Week is September 28 – October 4 and we are creating a big buzz in social media, spurring on awareness, understanding, and dispelling myths and misconceptions about living with illness.

We live in a culture that understands acute sickness. Tell a friend you have strep throat and your friend has an idea about what your next three days will entail. Friends grasp your need to rest, to eat a certain way, that you may or may not be online, the amount of medication you may take, and that you likely won’t be getting together for an event or working.

Chronic illness, however, is confusing to most people.

Illnesses that are indefinite (chronic) have a growing list of symptoms that differ between those with the same illness–and overlap with those who have different illnesses. There are no rules or guidelines about what you can and can’t do or should or shouldn’t do.

How can a person with illness barely be able to get out of bed one day and running errands for two hours the next day? If the medications are working, why haven’t you returned to your favorite activities? Are you depressed, and that is why you keep going back to the doctors over and over?

All of these are common assumptions from one who has not experienced a chronic illness.

Invisible Illness Awareness Week is trying to change that with a 2015 “My Invisible Fight Photo Campaign”

What are the photos of?

This is the fun part! Take photos of anything that is an #invisiblefight for you.

What is a fight for you that few people would even notice or understand?

Some ideas of invisible fight?

  • A staircase (or even one stair!)
  • A restaurant menu
  • The shower
  • The scale
  • A jar of spaghetti sauce (cannot open it!)
  • A pair of shoes
  • Your bed
  • A certain outfit or item of clothing
  • A blow dryer (that is heavy to lift)
  • A heavy door
  • A car’s steering wheel
  • Your purse (too heavy to carry?)

It doesn’t have to signify something you cannot do. It can represent something that is just an extra challenge for you, something that makes you sigh with frustration, or perhaps hold your breath with a bit of anxiety.

You can take as many photos as you want and share them all over the place between now and October 4th.

If you can, add #MyInvisibleFight to the actual photo.

What hashtags to use

The specific hashtag for this event is #MyInvisibleFight.

Additional hashtags you can use that are for Invisible Illness Awareness Week 2015 are: #invisibleillness #invisiblefight and #iiwk15.

Here is one of the photos I’ve posted:

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it's important to make people see the "visible" part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it’s important to make people see the “visible” part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

Lisa Copen established Invisible Illness Awareness Week in 2002 and she is excited to see how you touch lives this year in 2015!

My #InvisibleFight

“You’re looking pretty good today. How do you feel?” The response I often want to give is, “I feel like crap, but thanks for asking.” However I’ve come to realize that isn’t helpful to me or the person asking. It just shuts down communication, and I feel worse. I should be grateful that someone asked how I feel, even if it is just in passing.

If someone doesn’t suffer with an invisible chronic illness, it’s impossible for them to understand or comprehend the pain, struggle, and suffering we go through every day. Yet, we want them to understand, don’t we? Except for a few close friends and my husband who have walked alongside me with my invisible illnesses, most people don’t understand the numerous doctors appointments, pills and supplements, and traveling great distances for consults, second opinions, and skilled surgeons.

One of the most effective ways I do my #invisiblefight for the invisible illnesses I and my family have is through social media. It started simply by someone recommending to me a website called Rest Ministries (http://restministries.org), a website that ministers to the chronically ill. It has daily devotionals that speak to my struggles, informative articles, a chat room called “The Sunroom”, and specific groups that I joined to discuss specific illnesses or types of support. Eventually, I submitted several devotionals and articles to Lisa Copen, the founder, and she graciously accepted them for inclusion on the website. At Rest Ministries, I find great camaraderie, empathy, and understanding from fellow writers and others fighting invisible illnesses here.

The three invisible illnesses I have are ulcerative colitis, lyme disease, and endometriosis. Fortunately, my ulcerative colitis has been in remission most of the 33 years I’ve had it by taking daily oral medication. However, my two grown children both have Crohn’s disease, one diagnosed at age 8 and one at age 20, and they have had significant flares and changes in medications over the years. By God’s grace and advancements in research and medication options for Crohn’s patients, they are both in remission. My “go-to” website for information on these illnesses is the Crohn’s and Colitis Foundation of America (http://ccfa.org). This website has webinars with leading doctors and researchers in the field, a separate web area just for teens to talk with one another, the latest information on medications and treatment options, stories of those with Crohn’s or colitis who are making a difference, and many ways to get involved in supporting and promoting these diseases.

Due to the controversy over whether chronic lyme disease is a reality, I found it difficult at first to find reliable information, but through meeting hundreds of patients and being treated by two great Lyme Literate medical doctors (LLMDs), I have found reliable websites that offer names of LLMDs, effective treatment of lyme and its co-infections, and ways to advocate and support legislation for better research and testing. Just a few of those sites are ILADS Lyme Society (www.iliads.org), Lyme Disease Network (www.lyme.net), and the LDA–Lyme Disease Association (www.lymediseaseassociation.org).

Of the three invisible illnesses I have, finding current and reliable information on the internet, or anywhere else, for endometriosis has been the most difficult. It’s not considered a “big deal” in the hierarchy of chronic diseases–a few bad cramps, some severe bleeding occasionally, a few “minor” surgeries, and you should be up and running. If all else fails, most gynecological surgeons recommend a hysterectomy.

I’ve had endo for 27 years, had five laparoscopies, a hysterectomy, worked with a pelvic floor physical therapist, and tried numerous medications, and at age 59, still have pelvic pain. After my most recent laparoscopy in April 2015, I got serious about researching this disease and found that there are only a few surgeons in the U.S. who are endometriosis excision specialists. If you want to learn about endometriosis and find support from others who are experiencing debilitating symptoms, ask to join Nancy’s Nook Endometriosis Education & Discussion Group on Facebook. Two other great resources are the CEC–Center for Endometriosis Care (www.centerforendo.com) and the EFA–Endometriosis Foundation of America (www.endofound.org). Through these groups, I educated myself and am sending my medical records to three excision specialists with the hope of eradicating endo from my body for good.

Finding good resources of information from other people suffering from your same illness, discussion groups on Facebook, Twitter, or websites, or your own experience with good doctors can empower you and give you hope to keep up the #invisiblefight. And you can pass it on to others who are also fighting the #invisiblefight.

My ultimate weapon for my #invisiblefight is prayer and the strength that Jesus gives me when I don’t have the mental or physical strength to function. I know without a shadow of a doubt that God hears my cries when I lie awake at night wanting to sleep, but can’t. He knows my suffering because He suffered great physical pain, too. When no one else understands, He will never leave me nor forsake me. When I am unsure about a medication or treatment plan laid out before me, He gives me His wisdom that is way beyond my finite mind. He collects all of my tears in a bottle and gives me peace in the midst of the #invisiblefight.

But the greatest gift Jesus gives me in the midst of my invisible illnesses is joy. Joy in spite of the circumstances. Joy in His creation if I open my eyes and ears. Joy that He never sleeps and is always awake for a good cry or conversation. Joy when He uses my struggle to comfort and come alongside another who has the same illness. Joy that I can pray for others when I can’t do anything else. Joy that He is my greatest warrior in my #invisiblefight.

 

The Heat of Life Ripens Our Ministry

This is a devotional I wrote that was published on the Rest Ministries website (http://restministries.com).

“They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are alwaysRM ripen image for devo_10-5-14 green. It has no worries in a year of drought and never fails to bear fruit” (Jeremiah 17:8).

I live in Pennsylvania and by mid-August, the hot, humid summers give us ripe, red, juicy tomatoes. The kind that you take off the vine and bite into, with the juice dripping down your chin.

But not this year. It’s mid-August as I write this and our tomatoes are still green. Others who planted tomatoes are having the same problem because we haven’t had a hot, steamy summer, like we usually do. In fact, we’ve had only nine days at 90 degrees or above.

As a person who is not fond of hot, humid weather, I’m not complaining. However, our green tomatoes are proof that they only thrive in these conditions. This summer, the plants craved as much sun as their little solar-collecting leaves could gather.

Chronic illness can be like these tomato plants. We yearn for days when we have less pain, more mental clarity, and are more productive. Yet, our ministry to others is most “ripe” because we’ve experienced the discomfort of blistering heat, and the distress of oppressing humidity.

Our ministry is most “ripe” because we are totally dependent on God for our next breath, or our next hour.

We can only understand others’ suffering if we walk that same road. I empathize with women who have endometriosis because I’ve had it for 25 years and had it recur after a hysterectomy.

Our family helps others navigate Crohn’s disease and Ulcerative Colitis because three family members have these diseases. I understand the mental and physical pain that comes with depression because I’ve “been there.”

Though none of us chooses the path of illness, God can use it to comfort others in their pain, loneliness, and suffering. As we rely on God for our strength and perseverance in the “heat” of our illness, He is ripening us to minister to others.

When you can’t take another day of the “heat and humidity” of your illness, know that God is preparing someone to come and pluck you from His vine and to enjoy the juicy morsels of godly wisdom and comfort that only your experience can provide.

Prayer: Lord, it’s hard for us to reach out to others when the “heat” of our illness saps all of our energy. When we have better days or go into remission, help us to look for people in our lives who have chronic illness and share our experiences to minister to their hearts. Amen.

What have you discovered in your journey with chronic illness that could be helpful to someone else?

Recreate Summertime Memories

 “Flowers appear on the earth; the season of singing has come, the cooing of doves is heard in our land”            (Song of Solomon 2:12).

Oh, the lazy days of summer and the childhood memories that each one of us has! Drive-in movies, catching fireflies, picking berries, sleepovers with best friends, riding bikes all around town, going to the beach, fishing, camping, marveling at fireworks, eating popsicles and ice cream, and spending time at our grandparents’ house doing lots of different activities.

Many adults often long for “those good ole days” when life seemed so much simpler. Days when there was no school, no work, no schedule, less pressure and lots more fun! For those with chronic illness, we also think of days when we could enjoy an early morning run, swim until we turned into a prune, rode bikes or played ball until we dropped, or camped out in a our backyard without regard for bug bites, backaches, or lack of sleep.

In reading the favorite summer memories of those participating in the Rest Ministries’ Summer Bible Study (www.restministries.com),  the one memory that was repeated over and over again was spending time with grandparents at their home doing such things as milking cows, picking vegetables from their garden, picking berries from a bush or vine, sitting on the front porch, listening to their stories, and sharing a popsicle or ice cream with them.

Are you a grandparent? Ever think that inviting your grandchildren to visit and asking them to do everyday tasks with you could be a vacation for both you and your grandchildren? They get a different routine, and you get grandchildren full of energy willing to run errands, to help with your tasks, to listen to your memories of your childhood summers, and to have adventures with you! It’s a win-win vacation opportunity that will make memories for you and your grandchildren. If you’re a parent, visiting your parents for a few days this summer could create memories for three generations of those you love.

The Song of Solomon passage above is a description of the returning of the church to Christ, after a winter of suffering and restraint. Christ also calls our bodies and souls that have been cold, frozen, and hibernating, like the earth in winter, to come forth and bloom as the sun brings spring and, by degrees, summer. It’s a time of beauty and glory and singing that furnishes occasions for joy!

Prayer: Heavenly Father, only You know what makes my soul bloom and my heart sing. As I pray about a time of relaxation and vacation, please give me some practical ideas that will bring both joy and rest within my physical and mental limitations. Amen.

You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com

If you are a grandparent, have you considered inviting your grandchild(ren) and/or children for a few days for vacation? If you are an older grandchild, have you considered spending a few precious days with your grandparents to make lifetime memories? If you’re not either, what activity or vacation would make you flourish and bring you joy?