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?

Denise Portis

© 2012 Personal Hearing Loss Journal

American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (4th ed., text rev.). Washington, DC: Author.