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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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

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