Hearing Elmo welcomes Ruth Ilean Fox as guest writer for this week’s post. I was trying to remember the first time I met Ruth – most likely at a HLAA convention, but we’ve also touched base from time to time via email and now FaceBook. Ruth has always been an encouragement to me, so I was thrilled when she agreed to write for Hearing Elmo. Her reminders about embracing the freedoms we have is something we should all remember – and share.
Accommodations for disabilities equal freedom of functionality. Yet how often, instead of embracing freedom, have we turned down accessibility options because of personal discomfort.
Everyone has challenges, some slight and some difficult, which hinder the achievement of a particular goal. There are all sorts of tools and techniques that help to bridge these barriers to functionality. Glasses help some vision impairments; hearing aids and cochlear implants assist some hearing losses; sign language and cued speech provide alternative communication; canes, Seeing Eye dogs provide guidance for those with limited or no sight; wheel chairs, walkers, and service dogs assist with mobility challenges. Then there are ramps that provide building access, assistive listening devices that shorten the distance between the sound source and the listener; and captioned TV, phones, and movies enhance understanding. This is just a tiny fraction of hundreds of forms of assistance that is available to people with challenges. The list grows daily as new ideas are invented and accessibility laws are enforced. Most of these things were not even in the dreams of inventors as recently as 30 years ago. The ADA became law just over 20 years ago. It is exciting time for people with disability; challenges are being turned from absolute barriers to varying degrees of freedom.
Usage – Not Access Provides Freedom
Access to accommodation alone doesn’t provide freedom; it has to be used. Various situations cause people to reject available accommodations. Many people are apprehensive of publicizing the presence of their impairments. It is possible that they don’t like the way the accommodations changes their “average person” appearance causing stares and comments from other people. They may feel awkward with the use of an accommodation because it is new to them. Their patience may be stressed because accommodations don’t always work the way they expect.
As a person with multi-disabilities, who doesn’t want to miss the fullness that life has to offer, I have had a lot of experience with “seeking freedom through accommodations”. I have had the joy of watching the world develop from a time where you provide your own accommodations; develop your own accommodations; or patiently accept a significantly poorer participation in an activity where accommodations did not exist, to a world where accommodations are appearing in many places. Accommodations are appearing as public services, insurance companies are slowly accepting accommodations as reasonable coverage options, the market place is overlapping accommodation needs with features for the average person, and manufacturers are making accommodations more attractive as well as improving their capabilities.
Still even with this greater access to accommodation, it sometimes takes nerves of steel to venture out in public the first time with a new accommodation. My first accommodation experience was glasses at a time that “four eyes” was a favorite taunt of my eight year old peers. I would leave them at home, losing the freedom of sight. A hearing aid was the next accommodation, with which I experienced much anxiety trying to hide it and my hearing loss, instead of embracing the new found freedom of hearing. I did a bit better with the cochlear implant, as the novelty of it was interesting to most people. Then crutches, a walker, a mobility scooter, and a wheelchair became necessary accommodations for me. Each one of them caused extreme anxiety as I first used them in public. Their use provided freedom of mobility, but my focus was on how different they made me and I was sure that everyone was staring at me and my disability.
Hiding and Denying a Disability Does Not Make it Go Away
The one thing I did learn from my youthful response to glasses was to be persistent. Hiding and denying a disability never made it go away. I have find that even if my heart double beats; my face turns red; and my hands shake and sweat, I was where I wanted to be in the community. The discomfort was fleeting and I relax in the knowledge that most people around me respond more to my smiles and communication, than all my paraphernalia.
My wish for everyone struggling with the effects of disability, regardless of its degree or kind, is to explore accommodations; patiently work through the initial anxiety; and embrace the freedom.
– Ruth Ilean Fox
Many folks might be surprised that hypchondriasis is an actual psychological diagnosis. Perhaps it is because we misuse the word hypochondriac a great deal! We tease each other, making a big deal about stating we “may be coming down with something“; or, perhaps you know someone who complains about “something” being wrong with them ALL THE TIME. Something always hurts, or they have aches and spasms and feel “poorly”. In writing this, I can think of one or two people I know personally who are like this. I guess since I’m from the South, I mentally categorize them as WHINERS… although that isn’t a very good psychological label.
Hypochondriasis is misused a great deal, however. A whiner is not necessarily a hypochondriac. The diagnostic features of hypochondriasis includes: 1) a fear of having a serious disease based on a misinterpretation of one or more bodily signs or symptoms, 2) an unwarranted fear or idea of having a disease that persists despite medical advice and test results to the contrary, and 3) a preoccupation that greatly influences or impairs other behavior and the ability to function (DSM-IV, p. 462).
So we all know a whiner… but they are not really a hypochondriac. Sure we use this to tease – or discuss someone negatively behind their back. This person is comfortable verbalizing how they really feel… to anyone who will listen! However, the reality is they do not have hypochondriasis.
Invisible Illnesses and unwanted labels
Yup. We’ve established we all know whiners. Some of us work with these folks. Some of us love these folks. Some of us (gulp) are these folks!
However, in recent months a common theme has come up in many of the conversations I’ve had with people who have contacted me through Hearing Elmo. It seems a good number of folks with invisible illness or disability are often accused of being hypochondriacs. Not simply because the word is misused either. People around them honestly believe it is “all in their heads”.
I posted the picture I did for this post because shortly after sharing this picture when I first had my cochlear implant surgery, an individual (whom shall remain unnamed – grin) told me in response to my “how I’m doing” email that they thought it was terrible I had this surgery – permanently changing the way I hear, all because I was pretending I had a hearing loss. You see? This person knew me growing up. They knew me when I could hear. Approximately 4 or 5 months before my CI surgery we talked on the phone. They didn’t know that:
I was using a captioned phone and was READING what they were saying.
The phone was on speaker and my husband was enunciating words I did not understand.
I tell people when they ask me what motivated me to get a cochlear implant was I was TIRED OF FAKING IT. I had reached an all-time low and struggled to communicate despite my numerous coping mechanisms and communication strategies that I had in place. I was exhausted. I dreamed of being able to communicate orally with fewer difficulties.
I didn’t sound deaf (not having been totally without sound long enough to really develop a “deaf accent”).
I was still teaching and working.
I can’t really describe for you how these comments from this person affected me. I was – in a word – devastated. I couldn’t wrap my mind around why someone would seriously believe someone would pretend to not be able to hear, fake their way through all the tests, and undergo surgery that would enable them to hear – but electronically, all for attention or for “show”.
Many invisible illnesses can be difficult to diagnosis. Some test results for diseases like Lymes, may actually come back with false results. Many pain disorders, including fibromyalgia, are difficult to diagnosis. There are still medical practitioners that believe this diagnosis is “a crock” and it can be difficult to find a doctor who takes your symptomology seriously. It doesn’t help that many women are prone to these types of illnesses or disorders, as women are more likely to be accused of being “drama queens”, worriers, and hypochondriacs. The DSM-IV points out that hypchondriasis is equally common in males and in females (p. 464).
What can YOU do?
The problem with invisible illness or disability is that they ARE invisible. You cannot see the problem. People with invisible illness or disability also start to hide what is going on with their own body. Like myself, I actually faked being able to hear better than I actually could. Some may answer “how are you?” with “fine, how are you” out of habit. However some may respond that way out of FEAR to disclose the truth. Many choose to not even tell loved ones how severe symptoms may be that day because they believe their family members are tired of hearing it.
I checked in with a friend this week to let her know I was thinking of and praying for her. She responded to “how is the pain today?” with “pain is a constant friend”. You may not be honest with how you are doing because you believe others are tired of hearing about your “bad days”. Many choose not to disclose how they REALLY are doing as they fear derisive comments, exasperation, or disdain from those around them.
Do you know someone with an invisible illness or disability? If you ask them how they are – and you REALLY care about them – be a “safe” person for them to be truthful with when they respond! Have you blown it and shown your exasperation before? Do better. It’s not like your poor response has to be your normal response. Are you married to, or do you love someone who lives with an invisible illness or disability? It can be hard; but, wouldn’t you want them to love you and encourage you if the “shoe had been on the other foot?” – rather YOUR foot?
What is the Cost?
I believe that the reason many invisible illnesses and disabilities also have a co-morbid diagnosis of depression and even suicidal ideation, is because those around them do not believe them. They live with constant negative feedback when they do open up and honestly share how they are doing with others. Your disbelief can cause them to isolate themselves – dropping out of life. Your misinformed comments could cause them to start internalizing their feelings, making it difficult for them to trust anyone. Don’t be an – erm – DONKEY. One of the best things you can do for someone who lives with invisible illness or disability 24/7 is to simply BELIEVE them.
After I found people I could trust with how things were REALLY going? I was able to actually deal with my bad days in a more proactive way. Just knowing that someone believed me – empowered me. I couldn’t hear. I staggered because my world really DOES revolve all the time. That belief enabled me to refocus my energy in discovering ways to COPE.
Will you be that person to someone this week? Can you listen without skepticism and provide that assurance?
© 2012 Personal Hearing Loss Journal
American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
Geesh. I rarely miss a Monday’s post, but now two have actually gone by me! I’m working on a post that is an important topic for me, but it is not quite ready. Because I’m having “Hearing Elmo” withdrawals, I thought I’d post some tidbits that have been on my mind.
1. I was unprepared for the power outages affecting my “Dry n Store” in which I house my cochlear implant, as well as nightlights scattered throughout the house for my safety.
2. No matter how many power outages I’ve lived through, I still turn on the light switch when entering a dark room.
3. Dogs do not care about power outages. It hasn’t yet affected their two meals a day and daily walks.
4. Cats care about power outages, but cats seem to care about everything.
5. Young adult children can whine like very YOUNG CHILDREN when their computers will not work because the Internet is down.
6. It never gets old to step out of car (that I was driving) and someone walking by asks, “Is that a guide dog?” I still crack up every, single time!
7. Much to my son’s consternation, I thought it incredibly cute how proud of his “I voted” sticker he sported! This was his first presidential election!
8. My daughter had two wisdom teeth pulled this week. She was very brave. She was very drugged. She is very intelligent, asking her boyfriend to not allow her to post on FaceBook while she was “high”. 🙂
9. My poor husband doesn’t sleep well when his C-PAP machine fails to work due to a lack of electricity.
10. I don’t sleep well when my husband’s C-PAP machine doesn’t work. I may be deaf at night, but the flailing around knocks me right out of bed!
11. I will be glad when this election is over and the political rants stop. Or will they?
12. Missing three days of school isn’t worth it when administration tacks it on to the end of the semester.
13. I think it is silly that our dogs seem to shed right as the weather turns cold. Don’t they need more fur?
14. Garbage disposals do not work without electricity. Fishing out food by hand is not a pleasant task.
15. My favorite weather is clear, cold days. We’ve had a few of those this week!
16. I love volunteering for things that I know I can do despite hearing loss and Meniere’s disease. It gives me a sense of purpose.
17. One of my favorite things is to have coffee in a quiet location with a good friend. Unfortunately, mine live in numerous other states.
18. I may have been gone from North Carolina for ten years now, but I still say “y’all“.
19. I saw a spider the size of a half dollar this week and didn’t squeal like a girl. I stopped breathing – but that’s beside the point!
20. One of my favorite things about November and Thanksgiving is “Aunt Lynda’s Sweet Potato Casserole“. Yes, I know there are more important things to be thankful for, but I’m being honest here!
© 2012 Personal Hearing Loss Journal