Hidradenitis Suppurativa & Trauma

Part 2 of HS Awareness Week 2020 Series

Yesterday we looked at what HS is and what it is not. If you haven’t read Part 1 you can find it here. Today we have part 2 of the HS Awareness week 2020 series, HS & Trauma. HS itself can be debilitating. Medical care can be frustrating and frightening. And stigma and discrimination can have degrading and physically dangerous consequences. All of this can lead to psychological trauma.

This is a heavy topic, and it makes lots of people uncomfortable. But we must discuss it. This post won’t be exhaustive. But it will look at what Trauma is and what HS experiences cause Trauma. There will also be some information resources provided at the end and throughout.

What is Psychological Trauma?

Trauma is a set of physical and emotional responses to a distressing event. Those responses can stick with a person years after the event. For an experience to be traumatic, it will present some sort of threat to one’s sense of safety. That might be a threat to one’s body or sometimes, identity. It will also overwhelm that persons ability to cope.

For those who suffer, the event(s) never completely stopped for them. It isn’t something that happened years ago, it’s with them in similar situations. It can intrude on their thoughts , and their body holds on to the stress. If you want to understand Trauma, that is the most important part.

Not everyone who goes through a distressing event will experience Trauma. The kind of support a person has, whether the event felt personal. And that person’s resilience ability can influence whether they experience long-term effects. Distressing events can be processed.

However, if the event reoccurs like in chronic illness it can make coping very difficult. Misdiagnosis, treatment and stigma & discrimination can be sources of trauma.

Misdiagnosis

According to the Irish Skin Foundation, it takes an average of 5 doctors, 17 appointments and 8 years to diagnose HS. HS is complicated, but not that complicated. At least two episodes of boils over 6 months, where the lesions are and re-occurrence are the diagnostic criteria. And for advanced cases, HS can be diagnosed from scarring.

Many people who live with HS report they have been blamed for their symptoms. Weight-gain and other lifestyle choices have been misattributed to HS. As well as other conditions like folliculitis, cellulitis or acne. Some report that doctors have told them their condition was just how their body is. One might suspect that is code for I don’t know.

Can you imagine, having something painful and scary happen to your body and you get blamed for it? Or told its minor even nothing at all?

Treatment

Chronic illness presents challenges to a person’s sense of self. As well as challenging control over ones body. The situation is an ongoing situation with many events. It also requires several people you don’t know to examine and treat you. Symptoms affect intimate parts of the body which can be embarrassing not matter the means of treatment. Patients often describe feelings of shame. Navigating the health system is an ordeal all on it’s own.

Medical care is essential. HS will not disappear by itself. When a lesion gets severely infected, it can turn into an abscess. An abscess can be dangerous, and if it doesn’t drain on its own, a doctor may need to perform a small procedure. The procedure is called an incision and drainage (I&D). And quality of medical care following any procedure is essential to preventing Medical Trauma.

Medical Trauma is trauma person might experience resulting from illness or medical care. It can happen after a diagnosis of diseases like cancer or HIV. It can happen after surgical procedures or wherein a medical emergency. Remember our earlier definition of Trauma as a perceived threat to one’s safety?

Stigma & Discrimination

Chronic illnesses are stigmatized, especially if they become visible. HS in often hidden but like any wound, there are often complications like leakages. HS has complications like fatigue. These symptoms are judged as disgusting and lazy. A good rule of thumb is if someone is suffering, treat them with kindness and compassion.

Discrimination is stigma in action. And people who live in stigmatised bodies can be denied essential services. All because of the perception of their illness. Medical care can and does get withheld until patients make changes to their bodies. Those changes may help ease symptoms in some cases. But there is no cure and you can’t give yourself HS.

Shaming somebody is not medical care, but it does facilitate Trauma. if a person develops an abscess, it can be dangerous to that person’s safety. Fear or lack of trust may prevent a person from seeking help and becoming very ill.

Stigmatization, especially of ones body can lead to many psychological problems like depression, anxiety and eating disorders. Public perception of chronic illness can determine whether a person develops low self-esteem. Which all comes down to fear in the end.

Resources

Before we finish up, the main points have been:

Psychological Trauma is a long-term response to a distressing event. A person perceives the event to be dangerous to their safety.
Not everyone who goes through a distressing event will experience Trauma.
Chronic illnesses like Hidradenitis Suppurativa can be misunderstood. Resulting in harmful consequences for those who live with the disease.
Stigma, discrimination, medical trauma and delays in diagnosis are everyday experiences amongst those with HS. These present experience opportunities for trauma responses.
Educating ourselves is how we help. That might mean being informed on HS or on coping and resilience building.

If you want to know more about Trauma, check out a series on the Kati Morton YouTube channel, with trauma specialist, Dr Alexa Altman. Dr Altman talks about the concept of big traumas and little traumas. Your resilience zone, our body’s response and maladaptive coping strategies. Check out the series here.

If you want to know more about Hidradenitis Suppurativa, you can check out Monday’s post on what HS is and isn’t. And join me on Friday for my HS story

One last thing, there are many organisations online running events and articles this week. Go find them! Read them and share them.

Spread the word, shed some light!

And as always, leave your questions and comments below.