Tag: Living with Illness

Negative Interaction Makes Me Sick (Literally)

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Man and woman arguing

By Maureen DeGarmo

Have you ever noticed how you feel after a stressful conversation? Does it make your chronic illness or chronic pain symptoms worse? Has one of these incidents happened to you?

  • Trying to explain your chronic-illness symptoms to a doctor, who doesn’t seem to believe you and may even pose confrontational questions.
  • Having an acquaintance recommend that you get more sleep, get more exercise, or eat more salad. (Really? If my body would allow me to get more sleep, I would.)
  • Having someone close to you say, “Cheer up! It can’t be that bad!”
  • Being blamed for something you did not do. Having a family member snap at you. Disagreeing with your spouse.

Recently, I went to an event and the greeter (who was not a stranger to me) said that I looked “pitiful.” Little did he know that my pain was a level 6 that day, and walking was very difficult. I chose to refrain from commenting, due to the setting I was in, but if I had opened my mouth, he would have gotten an earful. I had no energy to respond, nor did I want to engage with someone who might attempt to justify his actions. Instead, I gave him my best glare and walked toward my seat.

That was several days ago, and I have not gotten over it. I have thought a great deal about how I will confront him (which I plan to do). I have asked a couple of people for their input. But, in the long run I know that if I had had the energy to either laugh it off, or respond with a short answer, then it would not be affecting me so much.

This is an example of how negative interaction makes us sick. We are already operating on low energy, and the negative interactions in our life can drain what energy we do have. So, how do we, as Illness Warriors, protect ourselves? Here are some thoughts.

Use the Buddy System. Whenever possible, try to have a friend or family member by your side when venturing out into public. Sometimes they might speak up, other times they can provide moral support.

One Thing a Day. My goal is to try to limit leaving the house to once a day, and choose other productive activities at home to add variety to my day. So, if I have an appointment in the morning, then my afternoon to-do list might include writing, meal planning or taking a walk around the neighborhood. This limits interaction with the public.

Have a Go-To Phrase. Select something short that you won’t regret saying, such as “You have no idea!” Or “If only you knew.” Or, “I hope you never experience anything like this. I wouldn’t wish it on my worst enemy.”  Or, “This is my pain face.” Whatever you choose, decide ahead of time what fits you and your situation without revealing too much.

Negative interaction does indeed make us sick. Literally. What self-protection measures do you use to help prevent making your condition worse?

When You Work with Someone Who Doesn’t Get It

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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

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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

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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?

Why I Wear My Happy Face

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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.

Laughter & Healing

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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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10 Signs You are at the Wrong Doctor’s Office

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

Have you ever been at a doctor’s office where you couldn’t wait to escape? Here are 10 signs that you are in the wrong place.
  1. You do not feel heard
  2. You do feel rushed
  3. The visit confuses rather than clarifies
  4. The doctor repeatedly interrupts you
  5. The doctor does not appear to be listening to you
  6. You do not have enough time to discuss everything that concerns you
  7. The doctor pays more attention to the person with you than she does to you
  8. The doctor provides remedies that do not apply to you, such as telling you to stop smoking when you don’t smoke
  9. The doctor is condescending, either in tone or in actions
  10. The doctor does not allow you to share important information that might have changed follow up care and treatment options.
…And how to change it

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Self-Sufficiency: Is it a Myth?

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By Maureen DeGarmo

Fellow professional organizer Seana Turner of The Seana Method recently wrote a blog post that struck a chord with me, entitled The Myth of Self Sufficiency. She shares why she does not ascribe to a belief in self-sufficiency, and reminds us that “at one point or another, most of us endure periods when our insufficiency is palpable… when our inability to ‘do it all’ smacks us in the face.”

I agree with Seana’s words of wisdom. As a person with a chronic illness, I realize that I cannot do everything that I would like to do. Indeed, sometimes our bodies simply refuse. Read Seana’s entire post, here.

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Getting Help When Your Family Isn’t Available

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

Traumatic Illness can cause symptoms ranging from mild to severe, with varying consequences. Symptoms such as pain, fatigue, loss of cognitive functioning or lack of mobility require different types of support. But, what do you do when your family cannot provide that support?

Perhaps you live far from family, or they’re unable to assist. Perhaps you live alone. Where, then, do you reach out for support? Continue reading →

Top 5 Effects of Chronic Illness

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By Maureen DeGarmo

Those of us who battle a chronic illness think differently than others. We filter everything through the difficult lens of “how does this affect my illness?” This is a necessity, not a luxury. Here are the top five ways that illness affects my life.

  1. Direct Side-Effects: When our bodies don’t function well, many parts of our life change. Digestive illnesses make going out to eat awkward or impossible. Someone with chronic back pain may not be able to sit through an entire movie at a theater. A person with a traumatic brain injury may forget a conversation you just had yesterday. These are the direct effects.
  1. Family: Every decision that I make affects my family. For example, a 20-minute drive causes increased vertigo for 1-2 days afterward, but if someone drives me, my symptoms are less severe. Also, for each choice – whether it is fun or productive – another activity must be reduced or eliminated. Therefore, each choice requires careful consideration before making any commitments.

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