Rebuilding After Illness

Kim Arthur

I recently had a catastrophic computer crash, and as a result, lost four years of my virtual life. Unfortunately, I did not back-up any of my work. I was devastated, but what could I do? No matter how much I begged and pleaded, the virtual life that existed before the crash was gone.

And so it also was with my physical life. After a car crash, my life that existed before was abruptly gone.

What is one to do when a crash, either virtual or physical, causes what once was to disappear? The only thing one can do? Take a deep breath, and start fresh.

I am slowly rebuilding my computer files. On some level, I feel an odd sense of relief that my computer erased so much of my virtual life. I had so many ideas and projects saved, that I felt totally overwhelmed by the sheer volume of “stuff.”

Interests waxed and waned, but the “clutter” of the ideas remained saved on my computer in case I regained interest. But the thing with computers is there is only so much room to store data. Eventually, space runs out, and there is no room for rich, new ideas.

When I rebuild my virtual world, I will choose to only keep those things which are in alignment with who I am now and what my dreams are in this moment.

If I look back on my own life prior to the car crash, I see much the same thing. I held on to things that were no longer relevant in my life. I did so out of obligation, expectation, or fear of letting go and allowing change to flow. (I don’t do change well!) In hoarding the past, I was not allowing myself room to enjoy a present, or to welcome a future.

This brings to mind a lesson about forest fires. While incredibly destructive and a sad thing to witness, they serve an important purpose; to clear away the old brush to make way for new vegetation to grow. That vegetation, subsequently, nurtures wildlife. It is life-giving. It serves a higher purpose. Looking back, I see now that my spirit wanted to grow in my old life, but my “ego” kept me living out of alignment with my true self.

And, so, maybe it is with us and this thing called fibromyalgia. Maybe it is here to help us clear away the old and outdated from our minds and lives, so that we may make way for beautiful new growth and possibilities. Maybe it’s all part of a higher purpose. Maybe it’s here to bring us into alignment with our true purpose, so we can release the superficial clutter we filled our lives with before.

When you live with limited energy levels, you must learn to weed out the things that no longer have real meaning in your life so you have the energy to enjoy those things that make your heart sing.

Fibromyalgia and other invisible illnesses definitely create unexpected change in our lives, but I believe that our ability to live positively and joyfully with this condition is dependant upon our reaction to that change.

Do we rebel and fight against it, forever trying to turn back the hands of time to what our lives were before we shared our journey with this illness? Or do we accept it, consider that it may have a higher purpose for us, and set out on an adventure to find fertile new ground upon which to plant our heartfelt dreams?

I think I’m opting for choice number two. What about you?

About the Author:
Kim Arthur is a self-proclaimed Champion of Creativity, Diva of Delightfulness, Fairy Godmother of Fun. . . Kim created the awareness music video, “Fibromyalgia: What It Feels Like” in which she relates sensations she feels with Fibro to sensations those who do not have the condition may have felt at some point. She is currently creating e-books, courses, and fun goodies for women living with Fibromyalgia. Visit: http://www.FibroQueendom.com A royally positive place for women living with Fibromyalgia.

Popularity: 7% [?]

Fun Resources For The Week – Quick Reference

Did you know just a few clicks of your mouse can help spread the word about Invisible Illness Awareness Week immensely! Thank you for participating in any of the ways below.

Copy and paste to your blog our press release and add your 2 cents too! Press Release About Bloggers for Invisible Illness Awareness Week

Read blogs about invisible illness

Writing your own blog? Share it with us!
Be sure to sign up here and list it here at Bloggers Unite so people can find it!

Are you on Facebook
Post a message on Facebook or your favorite social network about Invisible Illness Week

Please repost: “You don’t LOOK sick!” No, I don’t. But did you know that nearly 1 in 2 people in the USA have an INVISIBLE ILLNESS, such as diabetes, lupus, fibromyalgia, MS, rheumatoid arthritis, autism, bipolar disorder, cancer, heart disease, and many more. 9/12-18 is http://InvisibleIllnessWeek.com/ – Care enough to be informed and repost this to help spread the word! You never know how much someone is suffering silently.

Here are more Facebook goodies!

• Facebook Cause Page
• Facebook “Group” for Invisible Illness Awareness Week
• Facebook “Like/Fan Page” for Invisible Illness Awareness Week

Do you Tweet?

• Our hashtag is #iiwk11 (“invisible illness week 2011″)
• Cool things to tweet
• Get a Twibbon for your Facebook of Twitter avatar

What are people saying?
See what others are saying about Invisible Illness Awareness Week, their blogs about it, questions and more.

What is your favorite seminar?
Share a link to a program that touches you from our podcast seminars at Blog Talk Radio

Share a Video!
Watch and share on our videos! We appreciate it tons when you share it with friends!

Explaining Invisible Illness To Friends Can Be Challenging
http://invisibleillnessweek.com video shows how living with an illness can be hard to explain to friends who don’t understand how you pace yourself. Have you ever had a conversation like this one? What would you do differently? How do you explain yourself without sounding like a drag?

Living with A Chronic Invisible Illness is Like…
http://invisibleillnessweek.com shares some reflections on what living with a chronic invisible illness compares to, and they aren’t pretty–but they are real! But don’t lose hope! Connect with others and bring awareness to the campaign with a “deep breath, think fresh!”

 

Popularity: 10% [?]

Featured Workshops Today: Searching For Self Understanding

Do you ever feel a bit emotionally stuck? Whether you have the blues or have gone through some major depression, some our favorite marriage and family therapists join us with their seminars, as well as some illness advocates. All of these women Lisa is honored to call friend.

Here are some of their workshops we know you will enjoy and hopefully get something wonderful and helpful out of!

“Living with Chronic Illness: Why It Hurts, How to Cope” Georgia Shaffer, Maureen Pratt, and Mary Yerkes join us in an interview style 1-hour conversation. There are some powerful tools that can start helping you today!

A bit about these women:

Georgia Shaffer is a licensed psychologist in Pennsylvania and a certified life coach. For over 15 years, she has enhanced people’s lives by teaching how to identify: “What needs to grow? What needs to go?”

Author and speaker Maureen Pratt lives with multiple illnesses, including organ-involved lupus, cardiovascular disease, osteoarthritis, hypothyroidism, and chronic back pain. Through her books, including “Peace in the Storm: Meditations on Chronic Pain & Illness,” she encourages others to deepen their faith and Christian walk in spite of and with living with chronic illness.

Mary Yerkes is a professional life coach who specializes in working with the chronically ill. Diagnosed with rheumatoid arthritis and other autoimmune diseases in 1997, Mary combines years of practical experience with her professional training to help the chronically ill build meaningful and significant lives.

More programs you will love!

In the program, “Understanding How we Uniquely Deal with Difficulties in Life,” Georgia Shaffer explains how we handle the stress of illness in our lives is very unique to us. Our personality, faith, coping skills and more all come together and one person’s way is not better or worse than anothers.

Leslie Vernick shares with us something we all encounter at one time or another: “Dealing with Hurt Feeling and Mixed Up Relationships.” Leslie Vernick is a Christian counselor who doing most of her work with relationship problems. She focuses on improving relationships with others, God and self, teaching people how to address conflict, speak the truth in love, handle adversity in a God-centered way and negotiate through difficult and destructive relationships with biblical principles.

Regardless of your faith, Leslie will give some practical tools and tips to help you with the people in your life. When things go wrong in relationships, is someone at fault? Do you feel like you would have responded differently if your illness didn’t get in the way? Leslie will explain how to respond when things don’t turn out the way we’d hoped.

If you feel like there are times when you are messing up your own life, you’ll want to listen to Jenny Prokopy’s presentation, “Overcoming Self-Defeating Behaviors” Jenni is the founder of the popular chronicbabe.com

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 4% [?]

Video: Trying to Explain Your Illness to Well-Intentioned Friends

Have you ever gone to a party and stood around and had the conversation like the one below? If so, you may just be more “normal” than you think, because most of us with chronic illness could have written this script!

Friends can have the best of intentions, but we still can feel like we keep saying, “yes, but. . . ” and even we can get sick and tired of feeling sick and tired!

We look forward to your thoughts? Have you ever had a conversation like this? What would you have said differently?

Video is Copyright Lisa Copen, 2011 – Please feel free to embed or share, just include all code so it leads back to http://invisibleillnessweek.com – thanks!

Popularity: 9% [?]

About This Week’s Workshops

Monday is officially the first day of National Invisible Chronic Illness Awareness Week. In past years we have featured a 5-day virtual conference with special guests who help us learn to live better lives even though we also deal with the day to day struggles of an unpredictable chronic illness.

This year we will be featuring some of these exceptional workshops. Each day we will provide links to 3 or 4 podcasts we think you would enjoy. We hope that you find the information valuable and helpful and please feel fre to share it with a friend,on your favorite social network, or even in your own blog (you can actually get the embed code at blogtalkradio.com)

You can find them all podcasts here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 8% [?]

Is Living With Illness Choosing to Give In?

Lisa Copen

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.

Popularity: 14% [?]

“You Look So Good!” To Wear Make Up or Not?

Michelle Williams

Makeup can cover a multitude of defects; including some of the signs of our illnesses. I notice that when I wear makeup not only do I look better, but my demeanor changes as well. Makeup seems to be a little pick-me-up in the way I feel about myself, even if it is for a short time.

I realize that it may be a sign of vanity; that we should embrace what God has given us. I believe I am just enhancing what God has given me. What I mean is that I am just covering up the imperfections the many years of chronic illness has left behind and shining forth the image that God has originally created.

At the same time I also notice that people will treat me differently when I am wearing makeup. When I wear makeup I look healthier and in so doing I will get the old, “You look so good–you must be feeling better!” Don’t you just wish they would stop at, “You look so good”? When they add the other you feel like you need to explain yourself. “Thank you, but makeup covers a multitude of flaws. I really feel. . .”

Even my doctors will say something like that if I wear makeup to my appointments. When I don’t wear makeup to my appointment the doctor will ask if I am depressed. I will tell him, “No, I just want you to see how I feel as well. The yellowish complexion, the blotchy rash on my face and nose, the dark circles under my sunken eyes, the multitude of colors in my complexion. . .“

No matter what people may think or say, I wear makeup more for me. I seem to feel better about myself. I know it is just camouflaging the outward signs of my chronic illness, but at least every time I pass the mirror the multitude of times I have to go to the bathroom each day, I don’t have to see those many imperfections that my illnesses have left behind.

If wearing a little bit of makeup each day gives me a little pick-me-up then so be it. I just wish people would just stop at, “You look so good!”

About the Author: Michele Williams lives in a beautiful mountain community in Pennsylvania with her husband of 37 years who is a Pastor and Teacher at a Christian school. They have a grown daughter, son-in-law, teenage grandson and three furry children. Through the years the Lord has called them to various ministries in the United States where Michele has been involved in all aspects of church ministry in addition: Pastor’s Wife, Child Evangelism, Regional Women’s Ministry, Wellness Ministry, Speaker, Counselor and Writer.

Michele has experienced various life challenges including living with multiple chronic illnesses since 1985. Some of those include: fibromyalgia, osteoarthritis, peripheral neuropathy, interstitial cystitis, IBS, chemical sensitivities, asthma, sleep apnea, and treated for SLE lupus (among other illnesses). She enjoys encouraging and informing others through her blog: Beelieve You Can!, http://www.beelieveyoucan.net

Popularity: 15% [?]

Why Are We Expected to Be Brave in the Face of Illness?

Lisa Copen

The headlines read “Oliver Stone Hails Michael Douglas’ Brave Cancer Fight” and “Brave Brett Michaels wins Celebrity Apprentice.” Even as Belgian action movie actor Jean-Claude Van Damme recovers [this week] from his recent heart attack, I’m sure his friends are saying he is being brave about even the admission of this attack, which came just one day after his 50th birthday while filming a kickboxing movie.

Are those who suffer from stage-four cancer, such as actor Michael Douglas, brave? Are those of us who live with the chaos of chronic illness, such as musician Brett Michaels, who is one of 23 million insulin-dependent diabetics, brave? Are these individuals more courageous than actors Patrick Swayze or Farrah Fawcett, who lost their battles to cancer last year?

Does our society create grand expectations that exemplify bravery and courage as the only acceptable response to an illness crisis? Celebrities coping with health crises are just like the rest of us. They get up each morning and put one foot in front of the other, whether that means an unpleasant medical treatment or going to the grocery store–but these actions are typically photographed and labeled as signs of “bravery.”

I am sympathetic to the friends of celebrities who appear as a guest on a television shows such as The View and are asked to reveal how their celebrity friend with illness is “really doing.” There is no appropriate answer. If someone is truly a friend, as Danny Devito is to Michael Douglas, he is not going to say, “He feels terrible and isn’t looking too hot either.” Instead he will comment on how brave his friend is. It’s a considerate response to an awkward question, and it does contain a hint of truth.

Is there an alternative to being brave?

While there are tools online such as an illness symptom checker, there are few ways to understand how one is coping emotionally with a disease. If those of us with illnesses were to sit in bed and sob uncontrollably, how long would it take until our friends stopped calling us brave and said we were a basket case? Can a good cry be a sign of bravery, too? Who among us is not brave while fighting a disease that threatens to take away our quality of life or life itself?

What exactly is bravery?

The definition of the word “brave” includes possessing or displaying courage, being able to face and deal with danger or fear without flinching, and making a fine appearance.

I believe anyone has dealt with the fears of a health crisis certainly has moments of bravery. But let us not forget that emotions are fragile at times; allowing ourselves to be vulnerable and let some emotions through is not only acceptable but a healthy coping tool. Tears do not signify a lack of bravery.

When our loved ones see us look the doctor in the eye and ask, “How long do I have to live?” they are seeing us “make a fine appearance” as the definition of bravery possesses. They may not see the tears that fall uncontrollably in the lonely moments at 3 AM. Brett Michaels’ Rock of Love show may have been a successful indulgence, but when he was fighting for his life, it was his daughter’s fear of growing up without him that “gave me this unsinkable strength,” he declared on Oprah on May 19, 2010. “It gave me this amazing courage to want to survive.”

How does one show bravery in the midst of illness?

In 2009 I spent eight days in the hospital when I contracted the flesh-eating bacteria in an ankle wound that quickly spread up my leg. To be honest, I felt brave at times. I did not shed a single tear. My husband brought my then-five-year-old son to the hospital to play with the electric bed and eat mac-and-cheese from the hospital cafeteria. I gritted my teeth every couple of hours when another medical professional would visit my room with the intent of causing some kind of pain.

So, within the context of the definition of bravery, I made a fine appearance. I don’t know if I possessed courage, but I tried to display it. When faced with danger (like the daily debriding of the wound) I did my best not to flinch. But what choice did I have? The needles, IVs, MRIs, and pain medication disbursement were not in my control. I tried to be brave, but most of the time I was just choosing to “act” brave, despite my fear of the procedures and pain, frustration of the circumstances, and even panic over the possibility of losing a limb or even my life.

Can faking bravery can be enough to get us through?

In conclusion, let us remember that bravery can be a choice. Even if we do not feel courage, we can still seek to display it, we can attempt to face danger without flinching, and we can make a fine appearance. At the same time, let us not forget that we are human beings who were designed to feel fear, need affirmation and loving support, and shed tears. For myself, this is intertwined with my faith in God and knowing when to surrender to the emotions and when to surrender them over. Finding the right balance between putting on a brave front, and being true to our own emotions is, I believe, one of the best coping tools we can discover for the journey of chronic illness.

Bravery comes in many forms, not all of them gallant or daunting tasks. Michael Douglas’ films list is likely not important to him at the moment. Despite side effects of treatment for stage-four cancer, he recently walked his daughter to school, reveling in the moment that he was able to do so and wanting to treasure the simple moments. His bravery came in venturing out into the public eye, where his appearance and strength could be observed and discussed. Each of us must decide our own definition of bravery, and for those of us who know how much we suffer in silence, it may be as simple as making a fine appearance and then being our true selves around those we love and trust the most.

About the Author: Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and Rest Ministries, the largest Christian organization that specifically serves the chronically ill. This article was formerly featured at the Huffington Post and received 245 comments before comments were closed. See some of the interesting discussion at the Huff Post.

Popularity: 10% [?]

Seeing Beauty Through Our Pain

Kristina Schwende

I have not blogged for a while as I’m going through a very bad flareup. I have spent most of the past two weeks on the couch or in bed with an ice pack on my face. Today the sun was shining and I forced myself to go for a walk. I brought my iPhone with me as I love listening to Joyce Meyer when I’m out and about. I did my long walk very s-l-o-w-l-y. This allowed me the time to really look at the beauty around me.

I moved to British Columbia back in the ’80s because of the incredible beauty of the region. I vowed that I would never take it for granted. However, being in pain can sometimes cause my world to become so small that I don’t see the beauty around me. So today I took the time to enjoy it and captured some of the images.

When was the last time you looked for the beauty around you?

Have you let your pain block it all out?

We must remind ourselves again and again that there is more to our life than our pain. We can still find moments to enjoy. Do you enjoy photography? If you are able, look around your house or your street. Find the beauty right outside your front door. Do you enjoy music? How about taking the time to really listen to it– how each instrument blends with the other to create a beautiful melody. Are you a computer geek like me? Seek out things that you truly enjoy, maybe start your own blog!

Enjoy the people around you. Let them help you or see how you can help them and others. That’s why I started my own support group. I wanted to take take the focus off myself and turn my pain into something good.

The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you! That is why I tell people I struggle with Complex Regional Pain Syndrome. It sounds so much better then “I suffer from. . .”

Struggles can be overcome; Suffering is a choice.

Do you believe that last statement?

Do you honestly believe that suffering is a choice? Have you ever seen two people deal with similar issues but one is smiling through it all and the other one is complaining constantly? I have a dear friend who struggles with multiple sclerosis. She is the most positive person I know. She has completely accepted her condition and lives her life with pure joy–because she chooses to!

I will be the first to admit that I have problems with this concept. There are times (like in the past couple of weeks) where I find it so hard to find the joy in my life. But then my husband says something hilarious and we giggle like little kids. Or I look at the people I have met because of my journey through pain–wonderful people I would not have met otherwise.

Yes, beauty can be found through our pain, but it is a choice. I pray that you choose to find the beauty in your life today.

About the Author: Kristina Schwende was diagnosed with Complex Regional Syndrome in 2008. Since then, she has run the course of multiple painful examinations, tests and scans of every kind, and two pain management clinics. Through all this she has learned that stress plays a major part in her pain levels. She is also learning how to set healthy boundaries and pacing her activities. She founded Chronic Pain Warriors, a Christian support group, and will be starting a book study on how to set boundaries in September. Kristina is passionate about bringing chronic pain to the forefront and wants to ensure that no one suffers through their pain alone.

Popularity: 7% [?]

Am I Too Invisible For Accessible Seating?

Katina Stapleton

Like many people with lupus, I don’t look sick. This becomes a challenge when I try to use services set aside for the disabled, such as the designated seats on public transportation. Every day I ride a commuter train to work in the District of Columbia. The train is often jammed with commuters and I have to stand. Usually, my legs feel perfectly fine and I can stand all the way into DC, about a 35-minute ride. But if I am having a flare, my legs sometimes feel like someone has hit them with a car. On those days I really need a seat.

One day I got on the train with my legs feeling a hot mess. So I sat in the accessible seating area and rode the train until we reached a stop where someone in a wheelchair was being helped on the train by the conductor.

Right across from the aisle from me (also in a wheelchair accessible seat) was a guy who walks with a cane. “Cane Guy” started waving at me to get up and move even though 1) the wheelchair could have just as easily replaced Cane Guy’s seat as mine, and 2) the woman in the wheelchair was still being helped onto the train. Cane Guy just kept waving at me and I started to feel uncomfortable, like I had done something wrong.

Finally, I walked up the flight of stairs, and found another seat.

It was very surreal for me because I give up my seat all the time for people with wheelchairs when I am feeling well. But that day my leg hurt and I felt a wave of disgruntlement, especially towards Cane Guy. As I limped up the stairs, I thought to myself: “My leg hurts! Bad! Why did I have to move? I have just as much of a right to sit on the ground floor as you do, Cane Guy! Does your leg hurt as much as mine?!”

I got even more upset when I realized that not only was Cane Guy still sitting in the accessible seating area, so were four other people who could have moved instead of me.

I have never felt more invisibly ill than I did at that moment.

To Cane Guy and my other seatmates, I probably looked like a perfectly healthy person who should have been willing to give up her seat without question. After all, I did not have a health challenge that they could easily see.

At the moment I gave up my seat, I couldn’t think of what else to do besides refuse to move and create a scene. After all, the woman’s wheelchair did have to go somewhere, and my seat was one of the two best options (Cane Guy’s seat was the other).

What was I supposed to say? “Excuse me, I may look healthy (and fabulous), but I am really an invisibly ill person who is having trouble standing and navigating stairs. Can one of you move instead?” Well, actually, that is what I should have said, but I didn’t think of it until I had already moved and was mad, mad, mad about it.

As I stewed in my seat, I decided while it was too late to say something to Cane Guy, it wasn’t too late to say something to the conductor. So when I got off the train, I waited to speak to the conductor and told her I had felt pressured by Cane Guy to give up the seat I really needed.

She was actually quite kind, but noted that there was no visible signal (like a wheelchair or a cane) to indicate that I also needed the accessible seating. While I agreed with her in principle, I wondered if this could have all been avoided if there was some way that I could indicate being “physically challenged” without having to tell my entire health history on a public train.

While I love blogging about living with Lupus, I have no desire to tell my fellow commuters about it just for an accessible seat!

I finally came up with a future option that strikes the balance of providing information without over-sharing. If someone asks me to move for a wheelchair and I am not up to it that day, I will simply say: “Can someone on this level switch seats with me? I don’t mind moving for the wheelchair, but because I have a disability I also need a ground-level seat.”

About the Author: Dr. Katina Rae Stapleton was diagnosed with lupus as a teen. She has never let the disease stop her from having a full, fabulous life. After graduating from college, she went on to earn a doctorate in Political Science from Duke University where she specialized in the study of the intersections between politics, the media, and popular culture. Today, Katina is dedicated to empowering other people with lupus to follow their dreams. Her blog Butterfly Lessons: Living a Fabulous Life with Lupus shares personal stories, practical advice and resources with the lupus community. She can reached on Twitter as @ButterflyLesson and by email at Katina@KatinaRaeStapleton.com.

Have you ever been in a similar situation? How have you handled it, or how do you wish you would have handled it?

Popularity: 13% [?]

« Previous Page — Next Page »