Why I Only Talk About Weather…

The conversation we had today, I more or less just listened to you talk about your life. You seemed fine to hear about how my neighbor cut down their tree or that they are building apartments at the end of my street.

However, when I tried to turn the subject to my career, current or future plans. I merely shared two sentences. You shut down. You said you had to go to the facilities. And our conversation was over.

At what point did hearing about my life become hard for you?

Does hearing about my job pain you because you have trauma from them letting you go after working there for 36 years?

Does my schooling or my future plans pain you because you had aspirations of your own that did not come to fruition?

When I try to talk about my troubles around my skin, does that pain you because you feel responsible since it is hereditary?

When I had surgery this summery they asked who they should call to provide updates about my surgery. I said no one. They said you have your mother listed as your emergency contact and asked, should we call her? I told them no because she would just be surprised. She didn’t even know I was having surgery today.

You didn’t know because you don’t want to know about those things. You sound pained and you shut down anytime I talk about anything real.

So this is why I only talk about the weather.

It took me way too long and a lot of therapy to learn that this was never going to change. To learn that I need to stop trying to expect emotional support from you.

And even after I think I’ve learned it, I still find myself oversharing at times. Thinking somehow, maybe this time might be different.

I had to have EMDR therapy about the time I sat in the Allegiant airport after the Pulse shooting, bawling, and you sat stone faced next to me.

I had to have EMDR therapy about the times I spent, as a 6 year old, in my room crying and praying to a God who never answered, concerning the fact that I liked girls and thought I was broken.

Small traumas resurface in therapy like the times you’d yell at me for only wearing one of the 10 outfits you bought me for school. I only wore one, because it was the only one that I had managed to be brave enough to get you to buy me that came from the boys department. Because everything you made me purchase from the girls department made me feel terrible in my own skin.

So what is my part in all of this. My part, as I’ve learned in recovery about traumas we experience as children, is how I’ve allowed myself to carry that impact forward in my life. And yes, I do say trauma, although I know many had it worse. It took me a long time in therapy to accept that growing up as an emotional child with a non-emotional mother was trauma. It was traumatic for me.

One of the main ways I’ve carried this forward in my life is with my attachment issues. I tend to have insecure and avoidant attachments.

I have a hard time forming close relationships with others. In general, I feel reluctant to share about my life with friends because I think they’ll be bored or disinterested in hearing about it. Or that I’ll receive similar pained, judgmental, or non-emotional responses like I’m used to receiving from you.

I feel more comfortable sharing on a blog or through facebook to acquaintances or strangers. I suppose because there is no attachment there. I think sometimes this gives people a perception about me that is not complete. I think it provides them a sense of knowing me, without really knowing me. Sometimes I resent that, like, “you don’t know me.” Yet I continue to share, LOL.

I tend to overshare with those who’ve not yet earned the right to hear those shares. Because I don’t know how to set boundaries for that. This has at times placed me in a position to be hurt.

Brene Brown stated, “I only share when I have no unmet needs that I’m trying to fill. I firmly believe that being vulnerable with a larger audience is only a good idea if the healing is tied to the sharing, not to the expectations I might have for the response I get.”

I have absolutely not learned this skill yet.

Having self-awareness is great, but sharing it, when it isn’t something that is fully healed, with the wrong people, is extremely dangerous.

I’ve had situations when I’ve done this where it’s met with judgement or acknowledgement that I wasn’t ready to hear. Met with agreement, like, “oh yeah, you do that. Like when you do xyz.”

Thanks asshole. Another amends I need to make.

I literally just shared with you my awareness of that behavior. What I didn’t need was for you to provide me with examples of how I do it. Can I perhaps just get a bit of grace? I’m fucked up and I’m human.

But how can I be mad? I chose to open myself up to that by sharing it.

Speaking of sharing. I feel like I am done oversharing for the day. Thanks for listening.

Recent Mental Health Adjustments

It took me almost two years after getting sober to allow my therapist to convince me that I needed to be medicated. And boy did I. My emotions were so extreme and I was so sensitive to everything. It literally felt like I was an open nerve. I was in so much pain.

Finding the right medications and the right balance of medications was a long and painful journey. I went through almost 8 different anxiety meds before finally finding one that worked.

The current combination of pills my doctor has me on is 100 mg of Lamotrigine and 75 mg of Effexor once a day.

I had a bit of a manic episode several months back so my doctor upped the Effexor to 110 mg per day. This apparently was too much.

I went from some brief mania to completely flat. No emotions. To an addict, you would think this would be good. I mean, really! Who likes emotions?? But I felt like I lost myself and I even started to miss emotional pain. I felt like a masochist. I couldn’t find words and words are precious to me. Words help me feel alive and connected.

I had a hard time wanting to do anything but binge tv and lay on the couch. I became depressed.

In fact, I start fixating on thoughts of suicide. Not on doing it any time soon you see, but very stressed about having my plan and method to do the deed in place. If I could have a solid plan I felt I would be happier knowing I was prepared for when the time came that things became too painful.

The plan I started formulating was a drug overdose. I figured it sounded the least painful way to go. I had a surgery coming up for my leg, and I knew they would provide pain meds that I would not most likely need. And my plan was to store them and add to that stash over time until I had the quantity I needed. And then I’d be prepared. You know for the time. Whenever that was.

I even found myself googling, “what quantities of pills would a female who is 5’9 weighing 240 lbs need to take to die?” And “if you freeze medication does it make them last longer?”

I shared some of this thinking with my therapist, who proceeded to recommended that I go back to my med doctor and discuss adjusting my meds again. And to ask about going back down on my Effexor.

Clearly a bit of mania is better than suicide ideation. That’s the funny things about your own thinking. It can be so challenging to identify when they are off balanced or abnormal.

So it has been about 2 weeks or so since I’ve gone back down to the 75 mg of Effexor. I can feel the difference already.

I can get off the couch. And the shitty thinking that causes me emotional pain is back. But I am glad it is back. Because that means the words are back.

Man I missed words.

My perception issues of things such as, “my sponsor likes her better”, “I’m going to block these people from my posts on FB because… **some fantasized story**”, “my boss and co-workers don’t like me”, “pretty sure I will be fired tomorrow”…and so on.

Yeah, all of that is back. And yeah that sucks. But I have tools to deal with the thoughts.

I’m surprised to hear myself say this, but I prefer to feel. I prefer the thoughts. Even if they are shitty sometimes.

I suppose I can’t say enough about how important it is to prioritize mental health. I am grateful I have built this foundation with my therapist over the last 5 years of trust. So that even my most crazy I share with her. Otherwise I probably wouldn’t have shared it. I may not have gotten my meds adjusted. And then who knows.

Tonight I am grateful for my therapist. For words. For shitty perceptions and feelings.

Mental Illness Returns

Healthy me seems to have a lack of words,
When I get sick they emerge,
I can finally purge.
Pouring over me like the Atlantic,
Flooding the Titanic,
The words can be spoken,
Once I am broken.

Mania defeats,
I have to retreat,
Pinch it in,
Like a turtle poking out my ass,
Else I wipe,
And be covered in my own mess…
…I digress.

I’d been good for some time,
Even without the words, I was fine,
I had my art,
How far back did it start?
I didn’t see the signs,
Perhaps seeking comfort is where it began,
I know better than thinking I deserved to be touched,
I was asking too much.

Obsessing on illness,
Unable to find stillness,
Vacillating from 3 to 12 hours of sleep,
Then I started becoming a creep,
All it took was one trigger,
One small exchange
For it to became clear,
The beast was here.

Is my mental illness to blame,
Or is this just who I am at my core,
I’m going to owe amends,
For that I am sure,
From this disease,
There is no cure,
Only the reprieve that the meds provide,
That is, when I am balanced,
There is no allowance for being slightly off centered,
Because then I wreck.

I am better alone,
The dull ache as I am drowning,
What do I want self-pity?
Perhaps…
Perhaps…
I’m tired, the mania waning,
I’m done complaining,
At least for tonight,
Goodnight.



Getting What You Want Requires Doing What You Don’t

Getting what you want is hard. Who knew how important the things our parents made us do growing up were. Things like teaching us to not quit or doing chores. Things that teach you the very hard lesson that to reach major goals requires you to do things you don’t want to do, consistently.

Twice in my life I’ve lost over 100 lbs. Getting in shape is important to me for several reasons. When I am in shape I feel better and more confident in my skin, I have more energy, and less pain both in my back and knee. But to lose weight, to reach those weight loss goals, to keep the weight off, requires me to consistently do things I don’t want to do. Like walking in Florida when it is 100+ feels like degrees outside. I hate walking but I especially hate walking in heat. I have a bunion on my foot, a skin condition that doesn’t fare well with heat or sweat, a knee that has had 3 surgeries and is full of arthritis, and a bad lower back. Trust me when I say that I hate walking. But I’ve found at my age to lose weight it requires me to be active. In addition, having fur baby companions requires outdoor activity for them to also be healthy and happy. So I have to talk myself into doing what I don’t want 1 to 2 times daily.

Getting into shape requires me to talk myself out of eating what I want multiple times a day. Would I like to eat pancakes? Yes, that is most definitely what I want, every morning please, but reaching my goal requires me to not do what I want, over and over again. Funny thing about food too, is in the Noom program they teach you that you do need to occasionally “feed the elephant.” Which means that it is important to occasionally allow yourself to have a treat. Which is true. However, this is a slippery slope for me. In fact, the more I feed my elephant, literally, the more vocal that thing gets and the more frequent are its demands. Tracking what you eat on a day where you binged, or facing the scale the next day, no one wants to do that. However, to get what I want, I have to do what I do not.

Getting my bachelors degrees and post graduate degree required consistent actions of things that I didn’t want to do. It required me to spend my weekends researching instructional design theories and writing papers. It required me to take classes I had no interest in taking. It required me to walk through fear every time I got a new course or new assignment that I was certain I could not do. When the easier softer way would have been to just give up. The easier and softer way is alway giving up or not starting to begin with. It is avoiding change. It is remaining comfortable.

I really love the feeling of a clean and organized house. I have more peace and feel more happy when I can walk into my house and it is clean. To achieve this though requires me to do chores on a daily basis. Even on days when work seemed long and I’d much rather just binge some show on Netflix. Could I skip it on certain days, sure, and I do, however the longer I am lazy the less happiness I have with my surroundings and the more work it takes to get it back to that place of serenity. It took me a long time to learn that it is easier to maintain cleanliness and organization when it is consistently looked after. The result of consistently doing what I don’t want to do is a consistent sense of peace from my surroundings.

Financial health is something I’ve been working on for some time. Along with food it is one area in my life that has been hard to control. I like “stuff” and I like nice “stuff”. However, the debt and anxiety of that debt, I do not like. Therefore, to have financial health requires me to find ways to say no to myself. It requires that when I get my tax return and bonus, instead of buying things I want, like a jet ski or new clothes, that I put that money towards debt, or responsible things like a new AC. It requires me to reign in my spontaneity nature of wanting to take random trips and stay at expensive hotels to staying home or finding much lower costing compromises. It also requires me to look at what causes me to want to numb out with purchases and food to begin with.

I really like having nice eyebrows and prefer to not be that woman with a hairy lip. This requires me to pay someone to rip out my hair with either wax or thread. Or if I’m looking to save money for me to sit through the pain of plucking them out via tweezers.

Becoming good at a new skill requires consistent effort even when you suck. Nobody wants to suck. It is very demotivating. I would love it if creative ideas just popped out of my head and got transmitted to paper as a masterpiece every time. Unfortunately, it does not work that way, at least that has not been my experience. If you ask any great artist, regardless of medium, they will tell you that getting to where they are required them to practice their craft every day. To practice even when they didn’t want to, even when they sucked.

Being a person of character requires me to be willing to look at my part in every situation. Even if the other person had a part, a BIG part, it requires me to see my part to bring acceptance for theirs. We are human. It requires me to assume positive intent of other people even though my mind is constantly convinced that others are most definitely out to get me or reject me. It would be much easier to blame someone else. My part sometimes is not letting that shit go. Being a person of character requires me to do what I say I’m going to do even when it is not convenient. Even if I no longer want to do it. It requires me to examine my motives on things and not always just doing what feels good. It requires me to play that tape through and think about how I will feel about myself after or how it might affect other people. It requires me to have compassion for myself when I fail, which I do, frequently. It means even when you can’t be perfect, continuing to strive for perfection.

Back when I drank I didn’t try to achieve goals because it was easier to deal with being an underachiever than a failure. I lowered my standards and expectations for my own life so that I didn’t live with any cognitive dissonance. If I didn’t want to go to work, I called off, or I quit. If I wanted something I manipulated or stole. Getting sober required me to learn how to be comfortable in my own skin and with my emotions. Dealing with emotions has been one of the most uncomfortable things I’ve had to learn how to do. Something that I am still learning how to do. It was much easier when going out on a first date to throw back a few to get past those jitters versus just feeling your feelings and learning how to channel anxiety into excitement. I didn’t want to start a continued pattern of waking up in jail and this required me to do many things I didn’t want to do at first.

Successful adulting is hard. Reaching goals is hard. This is why not everyone does it. But it is worth it. I guess that was the point of this monologue.

Art and Flaws – Random Thoughts

My long lost love. I’ve left these keys abandoned for some time as I’ve been thoroughly courted and engaged by the colorful arts. However, you’ve been calling to me the last few days. For whatever reason I’ve been resisting. When my underlying emotions get too stormy though and anxiety has me questioning sanity, then I know. I know it is time for a visit. I have to speak even if there is nothing to say. I have to speak.

Some thought that has been persistent that I felt worthy of discussion was what makes something realistic. What is it in art that makes something beautiful? When painting or drawing the very things that make it come to life are all of the details. The shading and subtle hues. All the tiny details are what catches your breath. Writing is very much the same. In pretty much every English class i took in both high school and college they expressed the significance of the use of adjectives and descriptive words. It can feel corny at times to describe someones physical attributes in words when you are simply trying to tell your story. However, it is these details, these tiny strokes of adjectives and adverbs between the verbs and nouns that capture our imagination.

If you were to paint a pool and you painted it all one color of blue, how flat and boring it would be. It is all the shades of colors, refracted light and shadows, and reflections that create its depth. Just as you can train your eye to see these nuances and apply them to paper, I suppose it is with practice that you can do the same with words. The greatest writers and poets lapping on words linguistically to pages like oil to canvas.

On this same note, it is the these nuances of people which makes them beautiful. I suppose that is one reason why I favor women more than men. The very nature of women, packaged with so much mystery, so much depth, and intelligence. Complicated but beautifully so. Strange that it is the little things of others that often drive us crazy. However, it is those very little things that paint that person. Like the shadows and colors captured in oil paintings, it is only through the defects and flaws that you can accurately capture someone for who they are. Would you tell the ocean how much prettier she would be were she without the variations in color? How dull we would paint people to please the irritable beast that lies under each of our skins.

Something within us, our selfishness perhaps, self-centeredness, our ego, that causes us to tear at the flesh of flaws in the character of the imperfectly perfect souls who walk among us. As though we live without these flaws within ourselves. We are teeming with them. The flaws make up the very fabric of our being. We were not born to fear flaws. Perhaps from our red letter grades in our systematic schooling. Or the the materialistic ads depicting beauty in unascertainable forms. Like a splinter these foreign messages embed themselves under our skin. It is through nature, where we are free from judgement, which helps nullify and silence the pain. Pain that prevents us from feeling whole both internally and externally with ourselves and our fellows.

Yet we destroy the nature. The medicine we all need, we destroy. Unaware. Allured by greater highs, not peace.

The Light of Dreams

The light on the house feels warm,
For a moment I get lost in that life,
Or what I imagine that life could be,
Coming home to the one who sees you,
Having someone to consider…
The best part of every past relationship and love story flash before my eyes,
Constructing this dream where everything stays new,
If the feeling were a potion it’d be a mixture of ocean breezes, the smell of sunscreen and salt air, beautiful sunsets, and full moons on paydays starting a long holiday weekend.

Then the light at the intersection turns green and I have to go,
Leaving the house with the warm light and the dream behind,
Back to reality,
Where nothing new can stay.

Integrity

I’d never given much though to the meaning behind the word integrity. I knew integrity meant having morals and values and abiding by them. However, in reading, “Further Along, the Road Less Traveled,” By Scott M. Peck. M.D., he provides a more complete definition which is, “the state of being whole and undivided.” Basically having all of you be integrated. Being consistently you in every situation. When you think of integrity in this way it is much more profound. You can’t be you consistently if you don’t know who you are. You can’t be you consistently if you have fear of showing that self to others. Many people including myself have played the role of a chameleon at times. It takes real courage to be you at all times. A true level of honesty and vulnerability that most people are afraid to have. Committing to integrity has its price.

Many people I believe mask their emotions to others. Especially in business, it is almost expected for you to do so. To some degree this makes sense as you wouldn’t be successful operating under hysteria. However, as humans, emotions come with the gig. To expect someone to operate without them or to mask them expertly at all times is unreasonable. My honesty to myself and others about my internal state of emotions and thoughts are one area where I display high levels of integrity. This has not always played well in my favor. Especially during the years where my internal state was extremely volatile. My moods still, if I am not consistently using my tools and being mindful, can fluctuate unexpectedly. To some degree this is a part of just being human, moods and such. Having struggled with a mood disorder though for many years, my mood shifts are much more extreme than the average person.

In retrospect, I’ve wondered would I have a less muddled image if I had a better poker face? A better reputation if I were able to better hide my energy and emotions and put on the mask that many people are savants at wearing?

Brene Brown when she talked about vulnerability said:

“Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: “Who has earned the right to hear my story?”

I’ve always struggled with this sort of discernment though. I’m not sure I’ve ever made anyone “earn the right” to hear my story. My story is always here, accessible, and available. This could leave me in a place to be hurt, if I allow it to hurt me. It feels like I’ve trailed off from my topic a bit, but I think these are connected. My struggle with sharing who I am, my internal state, as a form of integrity. Should I be making people earn that right? Is a lack of discrimination in who I am honest or openness with, integrity? Or just stupid recklessness?

Living with Inverse Acne

I’ve decided to write about the disease that I have had since I was 15. The one that has tormented me and left me scarred mentally, emotionally, and physically. I’ve just recently begun trying to open up about the condition. Today I wrote a blog on shame and one of the ways out of shame that I had researched and read about was to open up about it. This disease causes immense shame, depression, and anxiety due to the ongoing stigmatization of the disease.

What is Inverse Acne you might be asking? It is formally known as Hidradenitis Supporativa (HS). HS is an inflammatory disease which causes lesions that typically form in areas where skin folds exist and where hair grows more significantly. The most common places for it to occur are in armpits, groin, under women’s breasts, and the anal areas. It can occur in almost any area on the body however. It can be hereditary, and it was handed down to me. As with most diseases, obesity and smoking are linked to worsening HS conditions.

The disease typically starts around puberty and thus has been thought to have some sort of hormonal linkage. I myself started seeing flare ups around the age of 15. I remember when I finally got the courage to ask my mother about it, she told me she too got them, and basically that it would go away. I wasn’t provided with any more information on the condition or ways to treat it. I know now this is because my mother has never been provided with that either. It is hard to get a correct diagnosis with HS and even harder to find someone who knows enough about it to provide effective treatment options. Many times it goes undiagnosed because patients are too ashamed to mention it.

There are 3 stages to HS. Stage I is a single bump with no sinus tracts. Stage II is more than one bump but little tunneling. Stage III is multiple bumps with a lot of sinus tracts and scars involving an entire area of the body. People can be in different stages at different times in their life and they can be in different stages in different areas on their body. They may have for example stage I in their armpits but stage III in their groin area.

There are a couple myths concerning HS which I will mention:
1. You have HS because you are overweight. People of all sizes have HS. Weight can be a factor in worsening HS flares since it creates more areas on the body for skin folds to rub but it does not cause HS. I lost over 100 lbs once and I did see a decrease in flares but it did not get rid of the condition. I still had flares when I was my optimal weight.

2. You have an STD. HS is NOT an STD. It is NOT contagious. Because HS regularly appears in the groin and genital area it can cause fear that it will be mistaken for an STD. Because of the area/location for which these occur (in the groin) area it can create poor body image and make sexual relationships challenging.

3. You’re dirty. Cleanliness can help manage HS but it does not cause HS. Because it is a skin condition staying clean can help the healing process but if you have HS it does not mean you are dirty.

HS is an inflammatory disease and there is no cure. Some patients go into remission in their later years, my mom however is 67 and is still dealing with the condition. Therefore, I do not hold too much hope for remission.

There are a plethora of treatment options out there and from my over 20 years of experience very few are effective. The issue with HS is that each person reacts differently to the various treatment options. What is effective for one person is not necessarily effective for others. For years my dermatologist had me on various doses of low grade antibiotics, such as moxifloxacin and doxycycline. Neither of which did much to prevent or lesson issues concerning flare ups. I was once told by an ER nurse who had to lance one of my lesions to be sure to change my wash clothes and towels after every use. Which is a practice I have continued to follow for the last 10 years. Again not by way of helping much.

Over the years I have had several areas that have had to be lanced including my stomach and back. Around 2015, I under went my first surgery for HS. What can happen with HS is the infection if it goes away and continues to resurface in the same area is it can eventually cause tracts of infection that form underneath the skin. When it gets to this point there are very few options of treating it outside of surgically excising the infected area and enough of the surrounding tissue in hopes of preventing its reoccurrence. The area I had my first surgery on was my stomach. The area directly below my belly button. I got flare ups in that area due to my weight and my skin overlapping in that area causing friction with my clothing.

Outside of weight, friction, and tight clothing, other things that can cause flares are excessive heat and sweating. Stress is also known to cause flares as well as some people report food as another flaring agent.

When I moved to Florida in 2016, I didn’t immediately notice a difference in my HS. Then around the beginning of 2017, I decided to really do something about my weight. I started walking very vigorously every day, sometimes multiple times a day. With that I did manage to lose 20 pounds. But between the heat and the weight causing friction in my groin area I developed several lesions which kept reoccurring in that area. Never really knowing how to treat them in the past I continued to exercise and just hoped they would go away.

It didn’t. It continued to get worse. In 2019, I ended up having groin surgery where about a 5 inch incision was made along my groin and labia majora. The whole process was extremely embarrassing and emotionally painful. Having to go to doctors and spread em’ and allow for the area of your body that you are most shamed of, to be seen by others, by strangers. As a female, this is one area you truly don’t want to have to be dissected and scarred.  I would have gladly taken back the 20 pounds I lost if I could have gone back and prevented the lesions from originally forming. That is the rub, not intending to be a pun, but that is it, you want to lose weight to help with body image issues and to help prevent flares but exercise can be challenging as it can cause flare ups. I am fortunate that I have a swimming pool. Swimming seems to be one of the few activities that I can do that don’t cause flares.

After my last surgery, I started seeking additional help and treatment options. I found a doctor in Miami who specializes in HS. I also found a couple of different facebook communities. Between the two I have learned several things I have been implementing over the last 9 months, with some levels of success.

I’ve learned that some of my flare up triggers do come from food, stress, being overweight, and heat/excessive sweating/rubbing. I’ve begun incorporating swimming into my life 3 to 5 times a week (depending on weather) to try to continue work on getting myself into a healthy weight. I now pay someone to do my lawn and landscaping work. I enjoy doing that work myself but with Florida humidity I’ve become too afraid that it could cause new flares. I’ve also changed my diet completely. The items they mentioned as general culprits are dairy, night shades (such as peppers and tomatoes), and grains. I have eliminated most of these almost entirely, with the exception of my occasional relapses with grains. I’ve been trying to practice mindfulness and doing yoga daily to help manage my stress. When I get stress not only does it trigger flares but I am prone to stress eating and when this occurs I typically eat foods known to cause flares therefore, doubling my chances of flare ups.

When I do get a flare up, that experience in itself is stressful. There is a lot of fear that it is going to be the flare that is going to become problematic, the new lesion that will put me back in the surgeons office to have additional parts of my body carved out. More scars. Because of this fear I am generally very hard on myself when I have flares. I blame myself, like, I shouldn’t have eaten that, or I am not doing a good enough job practicing mindfulness. I need to learn to have more compassion with myself. Even though I do fall short in some of these areas, this is a disease, and even if I managed everything perfectly I would still get occasional flares.

Here is my current regimen I am following to try to prevent flares using information I’ve gathered either from the HS support groups or my doctor. This is in addition to the diet, swimming, and avoidance of excessive humidity/walking that I previously mentioned. Every morning I take a daily probiotic, 50 mg tablet of zinc, a multivitamin, and 500 mg of Turmeric. I take a hot as I can stand it bath for 20 minutes, 4 to 5 times a week. In that bath I put 12 drops of oregano extract oil, 12 drops of tea tree oil, and lots of epsom salts. All of these are known for treating inflammation. The result is I smell like Italian food. On days I don’t bath, I shower with my fresh wash cloth using the recommended soap, Dove for sensitive skin, and I use a benzoyl peroxide acne cream wash. I dry off from showering with my fresh towel and then apply Clindamycin to any active flares. Clindamycin is a topical antibiotic treatment to help prevent as well as treat active HS flares.

With everything that I just expressed that I am doing, I report that I continue to get flares. Doing these treatments even with minimal success however allows me to feel somewhat empowered which does provide some hope. My most recent doctor suggested I try Humira which is a biologic that is used to treat things like HS, Psoriasis, and Rheumatoid Arthritis. It is an injectable, and something I’d have to inject once a week. When I researched the side effects they were extremely scary. The reason Humira helps these conditions is because it decreases your immune system which lowers inflammation. I opted not to try it for now and to continue trying to manage it using the regime I described above. I’m grateful that had been my decision because shortly after the Cornoa virus emerged. Many people with HS who were on Humira have had to stop their treatment temporarily due to fear that it will make them more vulnerable to Covid-19. I’m not saying I will never try humira. If managing it through this other regime proves to be ineffective and my condition worsens I’m sure I’ll become more willing to try other options. Fear and pain are great motivators.

The main purpose behind me sharing all of this is because I’m tired of being ashamed. I’m tired of being afraid to talk about it for fear of being judged, pitied, disgusted, and/or rejected. I started opening up about this with my sponsor and my therapist in 2019. In fact it was my sponsor who was kind enough to take me to and pick me up from the hospital after my groin surgery. I then most recently briefly mentioned it in a podcast that I did. I am beginning to share about it more openly. Just as coming out as being gay was painful and scary to talk about initially it was necessary for me to heal and for self-acceptance. I feel like this is the beginning of that process with my HS. Let the healing begin!

Online Shaming During the Pandemic.

I woke up this morning feeling very heavy with the amount of shaming that has been occurring over the last several weeks on social media platforms regarding the pandemic. People expressing their opinions, judgements, and jokes about others regarding toilet paper, travel, social distancing, and now wearing masks. Online shaming has in itself become a new norm providing an avenue for someone to express their judgement and get validated for it.

I’ve never had much education around shame. The most amount of education prior to today that I’d received on shame is from the TedX talk by Brene Brown. In her talk, she stated, “Shame is a focus on self, guilt is a focus on behavior. Shame is “I am bad.” Guilt is “I did something bad.”

Shame occurs regularly in society. It has been there all along and I never recognized it for what it was. “Shame is external and comes from judgment from others to try to enforce social norms…Social Norms are unwritten rules about how to behave. They provide us with an expected idea of how to behave in a particular social group or culture.” (McLeod, 2008). Examples of social norms include flushing the toilet when you exit a bathroom stall, washing your hands before leaving the restroom, covering your mouth when you cough, and chewing with your mouth closed.

Shaming is an “attempt to enforce either a real, or perceived, violation of a social norm…External enforcement for norm violation might be shaming or ostracizing the violator from the group; or it could be honoring an individual for compliance with the norm” (Klonic, 2016).

Shaming has been and is used in religion, politics, our schools, and legal systems. “In the bible, nakedness is a source of shame. The book of Genesis 2:25 says of Adam and Eve, “And they were both naked, the man and his wife, and were not ashamed.” That changed when they rebelled against God’s commandment and ate of the tree of knowledge. From then on, they felt ashamed in each other’s presence: “And the eyes of them both were opened, and they knew that they were naked; and they sewed fig leaves together, and made themselves aprons.” This biblical interpretation of nakedness as shameful still deeply informs the social norms and conventions that determine how we deal with human physicality and sexuality. Although our notions of whether, how, where and in the presence of whom a person may be undressed have changed over the centuries, the shame we feel when we transgress the norms has remained” (Kammerer, 2019).

My Catholic upbringing kept me in the closet for years for the fear of being shamed and shunned for being gay.

Our legal system uses shaming as a means for punishment and one form which I’d not given much thought to before is by forcing those who receive a DUI to have “drunk tags” on their car. Alcoholism is something in particular that is often publicly shamed due to the misunderstanding of the illness. Social shaming occurs within the recovery community itself to aid in enforcing certain behaviors such as getting a sponsor and service work. During the pandemic there has been shaming around those choosing to stay home and attend zoom meetings versus those choosing to continue to go to in person meetings. Those choosing to go to meetings quoting the responsibility statement. Those choosing to stay home quoting the CDC. Both creating a divide within the community.

As I continued my research this morning one article discussed how shame has been used in our school systems through charts depicting good or bad behavior. This made me reflect back to my second grade school teacher. She had a giant cutout of a dog house that she kept at the front classroom. Each student in the class had a bone with their name written on it. If we misbehaved in class we were asked to get up in front of the class and retrieve our bone and put it in the dog house. Clearly this made an impact on me considering this is one of the few things that I recall from my early years.

From the limited amount of research I have done, it seems that shame can sometimes be effective in controlling behavior, hence its still prevalent use in society.

The problems though with using shame as a means for social norms enforcement is, “it creates an ‘us or them’ boundary that reinforces group affiliation and separateness. It can become about groups, perceived good guys and bad guys and not about issues” (Rutledge, 2015).

“Shaming  is an attack, it triggers our desire to protect ourselves and withdraw. It is not the opening of a dialogue.  While I am in favor of highlighting places in society where change is desirable, promoting shaming as a solution hurts us all.   Negative emotions make people (and organizations) close-up; they diminish cognitive flexibility and lessen the willingness to consider other points of view.  Using social shaming creates exactly the opposite environment to the one that would be most likely to lead to positive resolution” (Rutledge, 2015).

The problems specifically with online shaming is that the effects are unending. Once posted, the punishment is ongoing which seems unjust for a potential slight infringement. In addition, it does not always take into account the full story. Perhaps the reason you saw xyz person without a mask, or out in public, is for a “good” socially acceptable reason? “When the state punishes, it has applied a process to determine whether the person being punished has in fact committed the thing for which they are being punished. No such measure exists in norm enforcement and the Internet’s ability to amplify social norm enforcement punishment is made even worse when there was no actual norm violation to cause it” (Klonic, 2016).

The other down side to using shame is that you can’t be sure of its effectiveness. Shaming is only effective if those it is being used on have the same societal norms as you and place the same value on those norms.

You also never know how shame will be internalized by another individual. Some people are more shame-prone and others more guilt-prone. People who are more shame-prone tend to have greater levels of depression and anxiety. Your intentions might be good in attempting to shame people to “right behavior” however if they are shame-prone it can have a much deeper effect. An example provided by Kammerer, 2019, shows the difference in guilt-prone vs shame-prone individuals. “A shame-prone individual who is reprimanded for being late to work…might be likely to think, ‘I’m such a loser; I just can’t get it together,’ whereas a guilt-prone individual would more likely think, ‘I feel badly for showing up late. I inconvenienced my co-workers.’ Feelings of shame can be painful and debilitating, affecting one’s core sense of self, and may invoke a self-defeating cycle of negative affects.”

We all are going to have judgements, we are human. Understanding the impact judgements and shaming can have on others though has been extremely eye-opening for me.

To end this on a more positive note, here are a couple tips I found on the Clearview Treatment Programs website, 2020, on ways out of shame:

  1. Seek out relationships and commit to vulnerability with safe people.Do everything in your power to find community. Shame begins to disappear when it is shared in a safe place.
  2. Move out of your head and into the open.Don’t keep everything inside. Put your shame out into the world. Write about the shame. Share your story of shame. Create artwork that represents your shame. Shame finds healing when it is taken outside of ourselves and placed into the world in some way.
  3. Develop self-compassion.Consider what you would say to a friend who was feeling the same things you feel. Begin to respond to yourself with love and care and concern, just as you would respond to others with love and care and concern.

 

 

References

Kammerer, A. 2019. The Scientific Underpinnings and Impacts of Shame. Retrieved from:  https://www.scientificamerican.com/article/the-scientific-underpinnings-and-impacts-of-shame/

Klonic, K. 2016. Re-Shaming the Debate: Social Norms, Shame, and Regulation in the Internet Age. Maryland Law Review. v. 17., Issue 4.

McLeod, S. 2008. Social Roles. Retrieved from: https://www.simplypsychology.org/social-roles.html

Shannon, Lori. 2020. Clearview Treatment Programs. 5 Ways Shame Can Shape Your Life. Retrieved from: https://www.clearviewtreatment.com/blog/5-ways-shame-can-shape-life/

Rutledge, P. B., Ph.D. 2015. Psychology Today. Shame on Social Shamers. Retrieved from: https://www.psychologytoday.com/us/blog/positively-media/201505/shame-social-shamers