Illness Anxiety Disorder & Somatic Symptom Disorder

A note on the newer terms for "Hypochondriasis"

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Today I am here in Madison. Back from six weeks (!) in San Francisco to help with caregiving of my almost three-year-old nephew, Joaquin, while his parents focus on their newborn, Rafael. I disrupted my life for this trip and there isn’t anyone else I would have done that for.

As an incredibly routinized person, this trip took everything out of me. I was outside of my comfort zone to an extreme degree. However, any time I leave my life for a bit, I remember how adaptable and resilient I am—even with all of the cptsd, anxiety, and neurodivergence.

As a kid, I was told my various adults that I wasn’t really feeling what I was feeling. As a teenager, I was told my by therapist that my feelings and concerns were not always valid. I can’t begin to tell you how much this fucks a person up. I will forever be tending to the pieces of me that were broken and disappeared.

I struggle with Illness Anxiety Disorder, but more so Somatic Symptom Disorder, and this makes life exponentially harder. I’ve written about this many times before. I’m definitely better at managing it these days, but I’m fairly certain it will always be with me. My interoception awareness is so strong. I notice every sensation inside my body and my brain decides it’s all bad. This makes all aspects of life and living uncomfortable. The second a healthcare worker sees “Generalized Anxiety Disorder” on my chart (which is not a well-named diagnosis, by the way—too damn broad), I am treated like a “hypochondriac.” I am treated like I’m just imagining things or making things bigger than they truly are.

Illness Anxiety Disorder and Somatic Symptom Disorder were originally referred to as, “Hypochondriasis.” The word derives from Greek meaning: "of the soft parts between the ribs and navel.” According to Wikipedia, “The term hypochondriasis for a state of disease without real cause reflected the ancient belief that the viscera of the hypochondria were the seat of melancholy and sources of the vapor that caused morbid feelings.” Ah, so that’s my problem then. All those vapors.

In 2013, the DSM (Diagnostic and Statistical Manual of Mental Disorders—the holy bible of mental disorders—which is also very problematic, but I don’t have the time or wherewithal to get into that), removed the term “Hypochondriasis” because it became a pejorative. Thus, the two new terms that were introduced were: “Illness Anxiety Disorder” and “Somatic Symptom Disorder.” IAD is more about excessive anxious thoughts about illness and diseases (and not necessarily feeling physical symptoms or sensations) while SSD is about sensations and feelings that become so distressing that they disrupt one’s daily life. Many IAD and SSD folks frequent doctor’s offices. I used to do this (thanks health insurance!). I also used to call and talk to a nurse. I stopped doing this several years ago—in part because I had better coping mechanisms, but also due to the fact that my concerns were often not taken seriously.

The risk factors for SSD include:

• Having anxiety or depression - CHECK

• Having a medical condition or recovering from one - CHECK CHECK

• Being at risk of developing a medical condition, such as having a strong family history of a disease - CHECK (diabetes and high blood pressure run rampant in my family)

• Experiencing stressful life events, trauma or violence (TOO MANY CHECKS)

• Having experienced past trauma, such as childhood sexual abuse (CHECK, not csa, but past trauma for sure)

• Having a lower level of education and socio-economic status (CHECK, for lower socio-economic status)

People who don’t live with IAD or SSD don’t understand how debilitating these disorders can be. It can be extremely isolating and lonely. My body does not feel safe (for many reasons), and the SSD and IAD don’t help with this. I can feel a single sensation, like a stomach cramp or something else that is relatively uneventful, but for me it will feel incredibly intense and send me spiraling until the sensation leaves or shifts. I will try various things to make the sensation fade or leave sooner. Since doing somatic experiencing work, I have begun to let the feeling or sensation hang out in the background—not ignoring it (oh would that I could!), but noticing it and not doing anything to try to change it. I am often considered “too sensitive” by health professionals. It doesn’t help that there are still so many jokes about “hypochondriacs.”

If you have IAD or SSD, you’re not “making up” how you’re feeling, but that’s how we’re often treated. Living with these disorders during a pandemic is showing the complete incompetence of therapists, psychiatrists, and anyone else working with people who have IAD or SSD. Getting Covid (and becoming debilitated by Long Covid) is a very real thing. Thus, we’re not overreacting or imagining something that isn’t there. It’s all very real and very terrifying. It’s compounded by the fact that many of us who live in the U.S. have shitty access (if any access) to healthcare coverage. So tell me again how we are imagining things…

Even if a person with IAD or SSD is imagining something, shouldn’t that still be treated with care and respect? The issue is not whether something is “real” to another person or not, the issue is that it is real to the person dealing with it and it’s causing immense distress.

When I look at the “Treatment” plan on Mayo Clinic’s website for SSD, I just have to laugh. You get two options: 1) Psychotherapy (CBT) and 2) Medications (SSRIs). Grrrl, I’ve done both (still on medication). Learning how to reduce stress is a main CBT treatment option, but how can you do that living in the current world? How are people whose basic needs aren’t being met supposed to “reduce stress”?

I pray there is more available someday in regard to treating both IAD and SSD (and any and all mental health issues).

I pray for healthcare professionals to take us seriously.

I pray for therapists to understand that suggesting your client get Covid and “get it over with” is not at all helpful, and is incredibly harmful.

I pray that those of us with IAD and/or SSD can live in a better, more caring and kind world.

I pray we find respite… and maybe a cure?

• Aaron Bushnell Died for Palestine - Kelly Hayes

• Hungry Women - Meg Conley

• "style as a form of refusal." - Raechel Anne Jolie

• Our Mourning for Nex Benedict Calls Us to Action Against Transphobia and Fascism - Kelly Hayes

• Stupid Power - Hamilton Nolan

• Libraries: the best form of government - Joshua P. Hill

• 'Beauty Felt Like A Second Job — One I Couldn't Afford To Keep' - Jessica DeFino

• Reimagining Life with Friendship at the Center - Anne Helen Petersen

• Forgetting You're Neurodivergent - KateFox

Been dancing to this song quite often:

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