KS and HS

Social Work Month

Social Work and HS

“As practitioners, social workers are trained to help people address personal and systemic barriers to optimal living.”
National Association of Social Work | socialworker.org

March is social work month!

I use my background in social work a lot when advocating for chronic illness awareness. It may not be obvious, but social work comes into play quite a bit when I am writing and creating my posts.

Social workers value 6 things:

Service
Social justice
Dignity and worth of the person
Importance of human relationships
Integrity
Competence

I use all of these values when cultivating KSandHS. Here are some examples of how I uphold these values in my advocacy:

To value social justice means that social workers challenge injustice when we see it. In the chronic illness world, this can be as small as challenging myths and misinformation when I hear them. It also can be as broad as advocating for and bringing awareness to inequity andl injustice in health care!

Social workers value service by helping people and addressing social problems. I volunteer my time on this blog and Instagram because it helps me but also because it helps others! Serving others by raising awareness about HS is an important use of my time and a vital way to address social problems.

Often, the dignity and worth of the person is not upheld in health care which is an example of one way we face injustice as people with chronic illness. As a social worker, I want others to be treated with dignity and worth that inherently comes to use as humans. I hope to be able to advocate for that on KSandHS by sharing how I advocate for myself and raising awareness of our rights and resources.

We also have standards which shape the way we act within this profession. For instance, as a social worker, I have an ethical responsibility to broader society, to advocate for the general social welfare and to engage in social and political action that seeks to ensure that all people have equal access to the resources and opportunities required to meet our basic human needs. Replace “basic human needs” with “health care and HS treatment” and you can see how I use social work to advocate for Hidradenitis Suppurativa awareness and the broader problems in public health.

Social workers also practice with cultural awareness and value social diversity. THis is an area in which I could improve KSandHS. I try to acknowledge the different challenges that different cultures and groups may face while managing chronic illness but I hope that I can learn more about this as I grow KSandHS. This is why I firmly stand with Black Lives Matter, women’s rights, the LGBTQ community, diversity within the disabled community, and other groups of cultural diversity and inclusion.

I do not practice social work in a typical way but the values and standards frame the way I approach most projects. In my Instagram, I strive to share important and accurate research in an accessible way. Holding myself to social work standards means that I disclose any conflict of interest and represent myself in the boundaries of my education and training. This is why I often clarify that I am NOT a medical professional and any decisions about your healthcare would be made in partnership with your healthcare team. I make sure to cite what I share for clarity and accountability and to ensure I present evidence-based information and best practices.

I want to use my privilege and experience to advocate for others, spend my time serving others and advocating for social justice through this platform. The feeling I get when people tell me that my experience helps them is indescribable. It is truly an honor.

To be a social worker means to have integrity and work in a trustworthy manner. By using these practices, my intention is that people can trust the information I share and that I add ethical and beneficial information to the public discourse of HS on Instagram and on my blog.

Is Hidradenitis Suppurativa a rare disease?

A rare disease is defined in the United States as a condition that affects fewer than 200,000 people. In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people.

It is estimated that HS affects 1-4% of the population. 1% of the population in the United States is more than 3 million people. Therefore, HS is not technically a rare disease.

But HS FEELS like a rare disease.

Rare Disease Day was February 28th and I shared this image to bring awareness to HS and how HS feels like a rare disease. The purpose of Rare Disease Day is to bring awareness to diseases that people would otherwise not know about. Diseases that do not have a lot of treatment or research. Diseases that have a serious impact on patients’ lives, beyond just the symptoms of the disease. These are the same reasons why bringing awareness to HS is so important.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day exists there is no cure for these diseases and many go undiagnosed. The intention is to improve knowledge amongst the general public but also decision makers and researchers… Doesn’t this sound like HS?

This is because HS is a rare disease in every way except numbers. HS feels like a rare disease when:

Research on HS is limited and rare. We do not understand much about HS and many medical professionals are not trained on it.
The vast majority of the people you meet have never heard of HS⁣
You have to educate the people around you on a basic understanding of the disease and what it means for you⁣
You’ve watched doctors look up HS right next to you after you spelled it out for them. ⁣
You have to visit on average 3 to 7 doctors before diagnosis⁣
It takes on average 10 years for you to receive a diagnosis.⁣
No one understands the cause or pathology⁣
There is no cure. There is barely any treatment.⁣
Having HS makes many people feel isolated

HS may not technically be a rare disease but it feels like one in every other way. It IS even classified as an orphan disease in the U.S. Orphan diseases were codified by Congress in 1983 to create financial incentives for drug companies to research and create treatments for diseases that would otherwise be ignored. In honor of Rare Disease Day, I’d like to raise awareness of HS in the hopes that it will be more known in the general public and prioritized by research.

Mental Health and HS

Hidradenitis Suppurativa is a skin condition that affects more than just the skin. It affects our mental health too! Mental health is a key part of Hidradenitis Suppurativa treatment. Our mental health affects our physical health and our physical health affects our mental health.

HS is a serious disease that affects quality of life. Anyone who’s had to fill out a quality of life assessment at their dermatologist knows this. I have taken several quality of life assessments from my dermatologists but none have referred me to a mental health specialist or offered me further support. Which is so frustrating to me – mental health is a significant part of treating HS. Let’s prioritize it!

HS can affect mental health in the following ways:

Depression – a significant percentage of people with HS also suffer from depression, with reported prevalence reaching 43% of HS patients. Studies suggest that depression is more common in patients with HS than with other dermatological conditions.

Anxiety – Anxiety is also higher in patients with HS than with other dermatological conditions. People with HS may experience anxiety due to the life-changing effects of HS. People with HS can worry about financial distress, they can feel anxious about sharing their needs, and/or feel anxious about the unpredictable nature of HS.

Helplessness – The unpredictable nature of HS can make people feel helpless as well. We have no control over what happens to our bodies. This means we feel like we have no control over external things as well – like socializing. No control can make people feel very helpless.

Stress- The burden of HS is extremely stressful. This stress is ironically a trigger to make HS worse. Financial worries, social isolation, remembering medication, and the burden of managing HS disease are all stressful.

Low Self-Esteem- HS is not a pretty disease. The abscesses and scars are unappealing. They discharge pus and blood, which is fairly gross. The pain and discomfort of HS can make mobility difficult. All of this and more can lead to low self-esteem and low confidence in people with HS.

Social Isolation – In response to the stigma and negative attitudes of people viewing HS (or any chronic illness/disability, really), people with HS often choose to socially isolate. This can feel like a safer choice but be detrimental to our mental health. Everyone needs a social support system.

Hopelessness- As there is no cure for HS, many who suffer from it end up feeling hopeless. The limited options for treatment compounds this feeling.

Guilt- People with HS have unique demands on their time and demands on their friends and family. This can make us feel very guilty.

Shame – The stigma of HS can lead to shame in many people. HS can make you feel unworthy, dirty, and unreliable.

Grief – Grief is a common symptom for people with chronic illness – we mourn the life we lost and/or could have had. Any new or worsening symptoms can renew grief and the cycle of mourning.

Anger- Who else rages about HS? I do ALL THE TIME. I feel angry that this is my fortune in life. I feel angry that I feel so helpless. I feel angry that I have to worry about it all the time. I feel angry at my doctors and insurance and medical appointments. Anger is an okay feeling as long as we deal with it in healthy ways.

If you are having any of these symptoms and you feel like you are not coping with them in a healthy way, please reach out, You can reach out to your doctor, to your friends and family, to a mental health professional, and/or to an HS support group.

** If you are having thoughts of self-harm, please seek help immediately. The U.S. National Suicide Hotline is available 24/7 at 1-800-273-8255 or you can text the crisis line at 741741 (in the US).**

What IS Hidradenitis Suppurativa?

Hidradenitis Suppurativa (HS) is a skin condition. HS is a chronic disease. HS is caused by the immune system. HS causes systemic inflammation. HS is both visible and invisible. HS is painful. HS is all of these things!

HS is a skin condition but it is more than just the skin. HS causes cysts or abscesses to form and reoccur on top of and just below the skin. These cysts can become highly inflamed, itchy, and painful. They can also drain fluid before healing or may drain below the skin, creating tunnels or sinus tracts. These cysts cause scarring on the skin. HS is also autoinflammatory, which means that the immune system creates too much inflammation in the body, which causes other body systems to go into hyperdrive. This is why HS is a serious chronic illness that can cause other symptoms, such as fatigue, fever, and muscle aches.

How do medical professionals define HS?

The American Academy of Dermatology Association says that HS is “a little-known disease that causes deep and painful lumps under the skin, usually in the armpits or groin.”

The Hidradenitis Suppurativa Clinic at the Rheumatology office with the GW Medical Faculty Associates defines HS as “a common chronic, recurrent inflammatory disease of the apocrine sweat glands. Patients with HS develop debilitating, recurrent, inflammatory nodules, sinus tracts and abscesses in the underarms, breasts, groin, and buttocks.”

The HS Foundation defines hidradenitis suppurativa as “a chronic, non-contagious, painful and quality of life impacting skin disease that causes boils to form in the folds of the skin and has a profound impact on quality of life”

What do all of these definitions have in common? HS is a chronic disease that affects the skin, causing lumps or boils, usually in the armpits, breasts, groin and buttocks.

What do these definitions disagree on? One says “little-known disease” and another says “common chronic disease” Truth is, HS is probably more common than we think, but because it is not well known, many people do not get diagnosed. It’s important to note here as well that HS does NOT always occur in the folds of the skin. It is rarer, but HS can also flare on the legs, arms, neck, back, and face.

What is KS and HS?

I started KS and HS as an instagram in February 2020. It is a place for me to share my thoughts on living with HS. It is also to raise awareness on HS, both for those who suffer from this disease but also for people who have never heard of it! If I can help just one person learn about HS, it will help us all.

KS and HS expanded from Instagram as I started to interact with more people in the chronic illness community and those who have HS. I want to share more information and lived experiences with HS. This blog will be a place for that.

Check out the resources tab for resources on HS that I like. These are some sites that I go to to learn about HS but I take what I find helpful and leave what I don’t. These and others inform the posts I share here and on Instagram.

Check out the FAQ page on HS to learn some answers to questions I get a lot. If you have any more, feel free to contact me and I’ll add more there as I get them!

Hope all is well,

Love,

Kathryn