When You Work with Someone Who Doesn’t Get It

Tired business woman

By Lisa Mark, C.P.O.

The conversation started easily enough. It was 4:30 am my time, 7:30 am at our meeting on the East Coast, and I felt as if I’d been hit by a truck. The alarm rang at 3:30 am, relatively speaking, and as I dragged my exhausted self out of bed I wondered, not for the first time, why we couldn’t start an hour later. In the conference room, a colleague said that I looked tired, and I agreed. She then suggested that I have some coffee, to which I replied that I didn’t think it would be a good idea to put anything in my stomach just yet.

Blank stare. Then: ‘But won’t some coffee help you wake up?’

As a professional who volunteers for our national Board of Directors, I am used to flying from California, where I live and work, to New Jersey, where we gather 3-4 times a year for intense three-day meetings. Our leadership is fantastic and I have learned so much from serving with some of the best minds in the industry. But physically, it is beyond tough.

And it doesn’t have to be this way.

I have asked, more than once, if we can start our meetings at 9 am instead of at 7:30 or 8 am. What a difference that would make. And the answer has always been no, because our Board is composed of people who mostly come from the East Coast, are supremely healthy, are morning people, and simply do not understand what it is like to have an invisible illness that is greatly exacerbated by spending 6 hours squashed into a flying sardine can and then having to be up and functional so early the next morning…and for the next 3 days.

I have finally come to the realization that I am working with people who, despite being intelligent and reasoned and experienced and kind, fall into the second category of our Illness Warriors Care Stand Chart: They may Care, but they Don’t Get It. Otherwise why not honor the request to start just an hour later?

I’ve tried to explain on numerous occasions how taxing it is to fly across the country and then be at my best so early, relatively speaking, in the morning. I’ve even, on occasion, been violently sick during the meeting because my body was just so out of whack. One of my colleagues still talks about the time I turned yellow as a marshmallow Peep and fled the room. I’ll spare you the details of what transpired next, but I will say that it is a good thing the bathroom was right next door to the meeting room. Another colleague routinely greets me with a boisterous ‘Good Morning! How are we feeling today?’ as if by doing so she can imbue me with some of her boundless energy. A third colleague, aware that I am not at my best in these circumstances, routinely asks how I feel and if there is anything she can do. (Yeah – start at 9 am instead of 7:30, thank you.)

Call me stubborn, but it took me nearly 4 years to accept the fact that I will just feel really, really bad whenever we meet. And I have stopped explaining to my colleagues why this is, what can be done to alleviate it, and how to help, because nothing changes. It is unfortunate, because it doesn’t have to be this way. But trying to explain to people who don’t get it, even if they do care, is an exercise in futility.

Despite the physical challenges, I am dedicated to my volunteer board position and to this association. But because of the physical challenges inherent in this job, I have learned not to say yes to everything that crosses my path. I have also learned to minimize the amount of time I spend on all things related to this position, while still attempting to fulfill my duties well.

During the last Board election, a colleague stepped onto the Board who also hails from California, is also not a morning person, and who also feels icky for pretty much the entire time we meet. And she does get it.

And that counts for something.

6 Self-Protection Measures My Healthy Friends Don’t Understand

Sunglasses and Sun Hat

By Maureen DeGarmo

I have been an Illness Warrior for forty years. That’s right…forty. I have a working theory that most of my mystery disease stems from a car accident that occurred in 1977. There is no way to prove it, because the only part of me that the emergency room doctors checked was my wrist. But, I am fairly certain that damage was done to my neck that fateful day, causing long-term difficulties.

You might think that I have had a long time to adapt to my problems. You would be right in a way, but, with such a long, slow decline I don’t even remember what it was like to feel good any more. The effect is that my way of relating to the world is largely determined by self-protective measures. These strategies are ingrained into my personality because I have used them for so long. Some of these are easy to understand, and others are not. Some of my friends understand, and others do not.

Sunglasses Indoors: Indoor lighting is often very harsh. Edison bulbs, florescent lights and spotlights all annoy my brain. Flashing lights are the worst. All of them are difficult to avoid. My best protection is wearing my sunglasses indoors. I wear the kind that wrap over my prescription glasses, so I can take them off when I want to. A few days ago, I was with a close friend who understands my condition and is very compassionate. She explained to her son, “the lights hurt her eyes.” Her acceptance of my unusual self-protection measure meant a lot to me.

Cover My Ears: One of the symptoms of my condition is chronic vertigo. Not the room-spinning kind of vertigo, but the sensation of being in a small boat on choppy water. As a result, I am easily startled by sudden noises, such as heavy machinery, music with a loud bass beat, or a door slamming. When possible, I cover my ears to muffle the noise. If I don’t do this, my vertigo is increased, so protecting myself is worth appearing a bit weird.

Avoid Bending Over: Bending over to pick something off the floor always results in increased vertigo. Recently, I was getting something out of the bottom rack of our dishwasher. From the next room, my husband could hear that I was out of breath. Although I cannot always avoid bending, I try to whenever possible.

Needing Help: Several years ago, I was on a day-long shopping trip with two friends. Without realizing it, I had stated more than once that I would get my husband to help me with something. One friend called me out on this habit of requiring assistance, in a way that was very clear to me that she did not understand my lack of independence. In that moment, I knew that I had to be careful in sharing not only details about my illness, but also with whom I shared them.

Walk With My Arms Up: I don’t remember when I realized that walking with my arms raised to the side, as if I were flying, helps with my balance. Somehow, it reminds me where I am in space and gives me a sense of stability. I am more likely to use this when I am alone, such as walking across a parking lot. I feel like a 4-year-old playing in the park, but it works for me, so I do it anyway.

Sleep Late: Among my family and friends there are several early birds who get up before the sun rises, take a walk, clean the house and feed the cat before my feet ever hit the floor. Fortunately for me, I am not married to one of those. We often get teased for how late we sleep, but I have gotten used to that. I know that sleep is one of the best things that I can do for myself. Especially when I have had an attack of insomnia, I try to sleep until my body wakes up naturally, despite the teasing.

Do you have self-protection measures that you do? Are some of them a bit odd? Please share your thoughts.

Who I Used to Be

By Maureen DeGarmo

There is no doubt that illness changes a person, but are those changes all negative? I have been trying to reconcile my pre-illness self with my current self, and to figure out what I have learned from my journey.

Joy: Joy is a feeling of delight or glee. Experiencing joy uplifts the spirit. Joy can brighten your day, and if you’re lucky it can carry over to the next day. I have a friend who has been battling cancer for several years, and he told me that his goal is to make at least one person laugh every day. But, it’s difficult to find joy when you don’t feel good. It seems to me that my younger self found joy more easily, and more often. I still try to find things that delight me, but I have to make a conscious effort to do so. I try to avoid movies that depress me and say yes to outside activities that will make me laugh. But, it does not seem to come as naturally as it used to.

Achievement: when I was a child, I was an over-achiever: striving to get all A’s in school and making sure that everything I needed to complete got done to very high standards. As a young adult, I was still a perfectionist to some degree, but that deep desire for perfection diminished long ago. Who has the energy? My current stance is that when you find yourself waiting until you have the energy to clean the house, and the perfectionist side of you tells you to wait until you feel good enough to make it perfect, then it will never happen. As we teach in our Illness Warriors Seminar, “Done is Better than Perfect.” My illness has indeed relaxed the achiever side of my personality. In some ways that’s good, but it also feels like my inspiration has decreased along with it.

Spirit: When I was in school, my psychology teacher asked us to list all the assignments that we had completed to earn a particular grade. My teacher was likeable and a good instructor but had a habit of changing the subject quite frequently during class. So, on my grade-requirements list, I included the fact that I was the only person who had the courage to keep a tally of how many times he had interrupted himself during a lecture (he responded to my little stunt with good humor). Little did I know that he had connections at the local newspaper and surprised me with a write-up in the gossip column.

That ‘spirited young woman’ feels like a distant memory. Although I certainly don’t have the energy that I did then, I have learned patience and calm, and to hold my tongue when I am angry or frustrated.

Creative: I used to love to craft, sew and create things. I enjoyed the process of design and seeing the finished result of something I had made. The down-side of crafting is cleaning up the mess, which of course requires more energy than I now have. Instead, I do creative work on my computer, such as PowerPoint design (which does not make a mess).

Sometimes I grieve for the joyful, creative, spirited person I used to be. Sometimes, I am thankful that I have grown. Either way, I recognize that life is not a straight line, but a series of ups and downs.

How has your illness changed you? Have those changes been both negative and positive? What have you learned about yourself?

How I went from Anger to Acceptance of My Illness

Woman holding her head and looking stressed

By Lisa Mark, C.P.O.

It is said that the stages we experience when dealing with a life-changing illness or injury are similar to the stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance.

My illness was so extreme, life-altering, sudden, acute, severe and painful that I skipped the denial stage and went straight into anger. What turned out to be Gastroparesis was at the time a mystery that stumped my doctors, whose responses to me ranged from outright disbelief to hostility. So, yeah, I was angry.

My anger was caused partly by the awful managed-care practitioner I was seeing at the time. He had the ‘Denial’ stage down pat and accused me of lying about my symptoms to hide what he said was the true cause of my illness: Anorexia. Or maybe Bulimia.

But it was also because I was really, really pissed about having gotten sick in the first place.

I was pissed at myself for ignoring my initial symptoms until they became too severe to ignore, and for my weakness in getting sick in the first place.

I was pissed at my managed health practitioner for not believing me when I said I wasn’t making myself throw up.

I was pissed at the ER docs who misdiagnosed my illness as ‘vague stomach upset’ and sent me home with an antacid and order to ‘get some sleep.’

I was pissed at my health plan for providing so few good health care practitioners in my network.

Angry that I had to stop nursing my infant daughter because the medications I was on might cross into my breastmilk and affect her.

Pissed that while I was struggling to get better, my friends were caring for their kids, going on vacation, working and living their lives.

Angry at the cost of the financial and other resources my illness was sucking away from my family.

Angry that the life I’d laid out for myself was not turning out as I’d hoped.

Angry at the lack of acceptance from friends and family members who didn’t believe I was ‘really’ sick.

I had two little kids, aged 5 years and 3 months at the time of my first illness, and they needed me, their mom, to be healthy and available. And I was anything but. I was pissed about that, too.

I just couldn’t accept the fact that I was so sick and unavailable during these critical first years with my kids, a time when my family really needed me to be healthy.

Yeah, I spent a lot of time being pissed. Which made it difficult, if not impossible, for me to heal.

The Turning Point

My friend, one of the few who didn’t abandon me when I needed her most, stopped by to sit with me so my spouse could go to work. I was so sick that I couldn’t be left alone. She sat next to me on my sofa, patiently listening while I ranted and railed about the unfairness of it all. Why me? I kept saying. Why did IIII have to get sick? Why couldn’t it have been any one of a number of other women that I knew?

When I was finished, exhausted and tear-stained, my beautiful friend turned to me and asked me the question that would start me on my journey of acceptance and healing.

She asked me why I thought it would be any fairer if illness had happened to someone else instead of me. In essence, she was asking, ‘Why not you?’

I hate to say it, but she had a point. Why, indeed, not me? Who am I to think I am exempt from this illness?

And it was at that moment that I started to accept my illness, let go of my anger, and heal.

Why I Wear My Happy Face

Woman smiling, looking away from the camera

By Maureen DeGarmo

When I am in a group of people, I try my best to wear a smile despite my chronic vertigo and frequent pain. This may seem disingenuous, but I do this to protect myself. In my experience, an event with a large group of people is not the time and place to share details or to provide an accurate response to the question, “How are you?” Here’s why.

I need a break from focusing on my illness. Most of the time, I am at home where it is difficult to focus on outside interests. If I am having a flare, then it is impossible to do so. Leaving the house for a fun activity of any type provides me with a welcome distraction. If friends ask me how I am, I know that they are doing so because they care about me, but I may not feel like talking about it in that setting.

I took the time to do my hair and make-up and I want to enjoy myself. Let’s be honest, there are days when I don’t really want to be seen. I may have what I call “sticky-up hair,” which means that I let it air dry and it is sticking out in an odd shape. My clothing is the most-comfy, least-flattering styles that I own. So, if I have taken the time to be proud of my appearance, then I want it to be worth the effort. I want to have fun just as much as my “normal” friends – perhaps even more so, because it happens less often for me.

You might judge me, and I can’t take that chance. Some friends will understand what it’s like to have a chronic illness, and some won’t. Loving, supportive people may see the physical and emotional pain that I am experiencing and try to suggest ways to fix the problem. This can do more harm than good, since not only have I probably tried their ideas already, but I feel like I have to defend myself. When I am attending a fun event, this can take more energy that I want to expend.

What is the solution? Start by ensuring that you are speaking to a supportive friend (read more about that, here). If a friend truly sounds interested, and you trust them to be supportive, then suggest a get-together on another day. If they don’t pass the supportive-test, then try having a couple of phrases ready in advance, such as “I am just happy to be here!” or “I am managing.” Remember that deflecting their comments is a way to protect yourself from negative comments or intrusive questions. Keep your voice light and move the conversation forward.

For more information on identifying your support system, check out the seminar recording that is included in our Personal Package.

How to Live with Hearing Loss

Illness Warriors would like to welcome our guest blogger, Kelly Lewis of Inspired Organizing.

I began college with the intention of becoming a Speech-Language Pathologist; however, during my undergraduate coursework, I decided to pursue Audiology instead. They share the same Bachelor’s degree, but at that time a separate Master’s degree had to be earned for each discipline.

I wanted to go into this field to help other people, even before I knew that I had experienced hearing loss. We as humans are excellent at compensating, and I had never realized that I watched TV with my head propped up or that I had to move the phone to a different ear when speaking to certain people.

I discovered my hearing loss by accident one night in graduate school, when a classmate and I were practicing a test on each other. This test enables audiologists to determine whether a patient has normal hearing or a hearing loss.

My classmate tried the test on me first and it didn’t work – we thought that the equipment malfunctioned, yet when I tried the test on her the equipment worked. After several attempts going back-and-forth, we realized that the equipment wasn’t broken…I had a hearing loss!

I have a condition called Otosclerosis and it results in a type of hearing loss called conductive hearing loss. Here are a few things that are helpful to me in coping with my reduced hearing.

1. Be a great self-advocate. Hearing loss is not typically visible to others. It’s up to me to tell them about my hearing loss and guide them to better communication. Hearing loss (or any other disability) is nothing to be ashamed of! Examples include:

  • Ensuring others have my attention before starting a conversation.
  • Ensuring we are in the same room.
  • Facing me when speaking to me so I can compensate with lip-reading and facial expressions.

2. Use captioning when watching television. It is draining to strain to hear all day long; if I want to relax by watching TV at night, it makes it tremendously easier to “hear” if I turn on the captioning. My sweet husband is so used to it now that I’ve come home to find him (with perfect hearing) watching with captions on.

3. Sit in the front row. I know that I can hear better when I sit closest to the speaker.

4. Protect the remaining hearing. I have earplugs in my purse, in my home, in my car, and anywhere else I can think to stash them.

5. Have your hearing checked regularly. Once hearing loss is diagnosed, a trained professional can take measures to preserve what’s left and potentially also to treat you.

6. Practice gratitude every day. We all have SOMETHING in our life that isn’t perfect (and most of us have many things). But we also all have a lot to be grateful for. I am grateful for the hearing I have left (I have what’s considered a mild to moderate loss). I am grateful for my other senses (my eyesight is still great!) I am grateful that we live in a society with so many accommodations, access to medical care and knowledge, and the ability to live independently and freely.

Kelly has a Master’s Degree in Audiology, has worked as a rehabilitation instructor for the Blind and Visually Impaired and also as an Assistive Technology Specialist. Kelly helps individuals explore their challenges and then works to implement custom solutions that allow them to live and work independently and successfully.

This post was written by Kelly Lewis of Inspired Organizing, with additional comments added by Lisa Mark who has experienced hearing loss herself. If you need assistance adapting to your new normal, please contact Illness Warriors for more information.

 

 

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8 Ways to Avoid Alienating Your Friends During Your Illness

By Maureen DeGarmo

One of the more difficult side effects of a traumatic illness can be alienating your friends. When you are in pain, it’s easy to become isolated and inactive. When you do have a visitor, you may be tempted to unburden all of your accumulated pain and frustration upon your visitor. Here are some tips for sharing your pain without losing the support of your friends.

1) State the facts, clearly and simply. Your family likely already knows the basics, so be brief. Some examples:

  • “My pain back has extended down my leg, and now my leg is tingling.”
  • “The doctor has recommended physical therapy.”
  • “I had an MRI last week, which revealed some nerve damage.”

Continue reading

Laughter & Healing

By Lisa Mark, C.P.O.

When I was in the throes of my illness a friend dropped by a pile of books for me to read. She told me, ‘Read the Bryson book first so you can laugh a little bit. It’ll be good for you.’ I don’t remember if I ignored her or didn’t hear her but I immediately dove into ‘The Color of Water’ by James McBride. This incredible memoir was both sad and serious.  I cried my way through the next few days as I read the book.

I was already spending a lot of time crying and really could have used a laugh. When I finished The Color of Water, I pondered the rest of the books in the pile my friend had left me and settled on Bill Bryson’s ‘A Walk in the Woods,’ a hilarious autobiography detailing the author’s attempt to hike the Appalachian Trail. I laughed my way through the book and found, to my surprise, that although I was still terribly sick, laughter brought a sense of well-being that I hadn’t yet experienced during my illness.

As I travel through my journey with illness, I discover that there are actually centers that research the effect of laughter and psychological well-being on healing. One of them, the Cousins Center for Psychoneuroimmunology at UCLA, was founded by author Norman Cousins after he was diagnosed with a particularly painful type of arthritis. During the course of his illness, he noticed that spending some time watching funny movies improved the way he felt and even enabled him to sleep for a few hours despite debilitating pain.

From the Cousins Center website:

“Science is beginning to uncover some of what happens inside the body in response to laughter. Laughter Researcher[s have] found, in clinical studies, that laughter has positive effects on the neuroendocrine-immune axis by reducing some classic stress hormones.”

There is even such a thing as ‘laughter therapy.’ And truth to that old adage: laughter is the best medicine. So despite illness being no laughing matter, perhaps a bit of laughter can help us all to feel better.

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Lisa’s Story: Gastroparesis

By Maureen DeGarmo and Lisa Mark, C.P.O.

What would you do if suddenly you were unable to eat or drink anything at all? Gastroparesis is a condition that paralyzes the muscles of the stomach and causes them to stop working. This condition makes it difficult or impossible to digest food.

August is Gastroparesis Awareness Month, recognized by the U.S. Department of Health and Human Services on the Health Observances Calendar, which is designed to spread awareness of a variety of health conditions. Continue reading

Organizing to De-Stress a Major Illness

By Hazel Thornton

Illness Warriors would like to introduce our guest blogger, Hazel Thornton of Organized for Life. Hazel has written an article discussing the idea that “the more organized you are, and the simpler your household processes, the less you will worry about things getting done, freeing you to focus your energy on getting well.” The post includes organizing resources and information in four categories:

  • Organizing Your Medical Records
  • Organizing Your Support System
  • Organizing Your Home
  • Organizing Your Self

My favorite tips are: Continue reading