Negative Interaction Makes Me Sick (Literally)

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?

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.

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.




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.





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

How to Be Your Own Medical Advocate

By Lisa Mark, C.P.O.

In 1996, I had an illness that nearly killed me. I was exhausted, felt awful, could barely stand up, and had trouble remembering things. Yet I somehow had to find the energy not only to take care of my newborn and 5-year-old, coordinate our upcoming move, consult with doctors and other medical providers on my condition and treatment, and receive treatments that might or might not help me regain my health, but also track our quite substantial medical bills in order to forestall what would have been economic ruin for us.

At the time, most of our medical providers did not file insurance claims, so that task fell to me. One of my clearest memories is sitting on the floor of our home office, surrounded by piles of medical claims that needed to be reconciled. I remember the Continue reading

How Illness Can Change You and What to Do About It

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

Pain can change a person, as can other chronic conditions such as overwhelming fatigue, neurological disease, digestive diseases or other disorders.

If you have a chronic condition, then most likely you know what that means. Think back to before your health began to change. Were you more lighthearted? More patient and understanding with your loved ones? Perhaps you valued spontaneity and adventure in your life, which is now a distant memory.

If you are the care-giver for a loved one with a Traumatic Illness, then you may be on the receiving end of both alterations to your daily life as well as personality changes. You might be required to do more meal prep, more driving or more household management. Your loved one might have a shorter temper. She might yell more than she used to, have lost the ability to express herself or lost her sense of humor.

Although there is no one-size-fits-all solution, here are a few things that can help: Continue reading

Why The Cane is Our Friend

By Maureen DeGarmo

My parents grew up in the Great Depression. For them, self-reliance was very important, and they avoided anything that might diminish their sense of independence. Using a cane was one symbol of declining independence.

I feel just the opposite. For me, a cane is a great communicator. It is a silent, tangible signal that changes the way others react to me in public, and therefore I do not have to actually warn people of my tenuous balance.

It says:

  • “Don’t knock me over.”
  • “Don’t expect me to move quickly.”
  • “Something is not working properly.”
  • “I might not react as you would expect others to react.”

A while back, I was in a store with my cane. Continue reading

Getting Help When Your Family Isn’t Available

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