Attunement
Attunement describes how reactive a person is to another's emotional needs and moods. A person who is well-attuned will respond with appropriate language and behaviors based on another person's emotional state.
As always - I write with a heavy dose of satire. My blog is a reflection of my voice and my experiences. It should in no way be taken as medical advice. If you feel a kinship with my patient journey or feel that you may have #HS, please seek out a licensed dermatologist with experience treating the disease.
It's been a while since I've written anything really raw. Like since I launched. If you've been following along, it's no secret that I have had a summer. and I haven't been as devout to posting as I wanted to be.
In March of this year, while working, launching my platform, shifting my mindset to posting more meaningfully, and settling into my first year of marriage - I still had to undergo treatment for my #hs. Treatment for me is going to look different than for any other patient. The disease is mercurial and tenacious - what works for one person, may not have a benefit for another. In fact, it could make it worse.
Treatment is usually PDT or Photodynamic Therapy, it's a laser-activated acid that is applied to the #hs diseased areas of my body. Over the course of a six-week period, the acid, which has soaked into the diseased tissue, will burn out any #hs nodules, and cysts, and reveal any tracts lurking under the skin. I do this 3 to 4 times a year. We usually find the problem children (tracts for excision) between rounds 2 and 3. This year was no different - we found a problem child under my left axilla. Very close to the excision site from a year ago (discussed in The Plight of my Wedding Dresses).
The first rule of living with a #chronicillness, you have to learn to be flexible.
The plan was to remove the #hstract, and very #sclerotherapy in the same week. We wanted to reduce the amount of time I would spend running between the office and home. We also wanted to condense my recovery so I potentially wouldn't lose my entire summer.
Well - here we are. August 4, and in the last 3 weeks I've had 2 rounds of #sclerotherapy and a second excision. I have new stitches, that are thankfully healing more quickly, due to the second excision.
I did the last 3 to 4 weeks of treatment in relative privacy. James flew home early from a work trip to help me during the excision and made sure he was home on the days I had #sclerotherapy.
The second rule of living with a #chronicillness, you have to learn to filter out the noise.
In sharing my journey, on this platform that I design and control, I oftentimes forget that I've opened myself up to other people. I get secure in control. I control when, what, and how often I post. I don't have to show you the worst days when they happen - I can wait until after the worst has passed or until I'm a little less fatigued. Or a little of both.
The title of today's post is Attunement. And it's apt. James and I stay in our privacy because he is attuned to what I need, and I am attuned to accepting his help. There are very few people who I am attuned to accepting help from. The reality is, I could do all of this myself, but part of my own growth journey as a person has been to accept help when I need it.
This doesn't mean, jumping up and down and offering support, this means, being careful and measured. I very rarely bring my illness up in conversation. And outside of the core 4 or 5 friends who really understand how to help me (whether by listening, sending their husbands to help James, or coming over to help me fold a load of laundry), we don't share more than that.
#HS is chronic and incurable - if I got overly emotional or angry every single time I got a piece of bad news or a setback, I wouldn't be able to live my life. So when I get lots of commentary or feedback - I smile and say thank you, I'm feeling fine, and filter out the rest. Because while it's well-intended, it is noise to me.
The third rule of living with a #chronicillness, you need allies.
Attunement, to me, is recognizing that I am fighting a battle you cannot see. And acting with compassion not just towards me but towards everyone you interact with on a daily basis. Professional or personal. This is more than doing unto others, this is integrating acts of compassion, empathy, candor, and integrity into how you lead. If you're in a position to influence benefits, compensation, work-life balance, and/or anything that could potentially allow an employee to maximize their output while keeping them engaged by treating them well - you should do so. If you're a friend, silent acts of love are incredibly powerful. Serving others, by meeting them where they are is an act of attunement. That's not badgering with texts or social media shoutouts - it's simple, how can I help you (or not help you) during this time?
My circle knows I value my solace during this time. It is not in my nature to go slow and to take rest. I am having to be kinder to myself, to my partner, and to my life when I am in recovery. To me, it's just another summer of recovery. It's another memory - a positive one because I am okay.
It's no secret that I have an unconventional relationship with my family. My diagnosis definitely attributed to that. I spent the majority of my formative years in and out of surgeries, recoveries, and appointments.
During my #sclerotherapy appointment, my doctor and I reminisced about it. When I was a pre-teen and teenager, we always scheduled my surgeries around being able to go to summer camp in NC so we could at least honor a part of my childhood being happy. Even during really terrible recovery bouts, I would always cycle through the same 8 to 10 movies on repeat - She's the Man, A Walk to Remember, Sleepover, and How to Lose a Guy in 10 Days, etc. All predictable and light-hearted rom-coms. The same could be said for novels. James asks why I'm drawn to films and books like this and I explain it's because they brought me comfort and predictability when I was in an incredible amount of pain.
My parents never once actually explained what was happening to me. I slowly started to learn and champion my health when I was in my mid-twenties. If you're an #immigrant or #firstgeneration then you know why. Our parents/families don't ask for help and don't share our burdens widely for fear of being perceived as weak.
This also extended to the family - my cousins (several of whom are doctors now), my only sibling and some of my uncles didn't realize until later in my adult life that I had been living with #hs since I was 10. These missed opportunities to create better relationships during formative years with people who actually understand exactly what it's like to grow up the way I did is something I actually harbor resentment for.
I recently realized the gap that exists for my parents when they mentally try to wrap themselves around my never-ending treatment path. They internalize it as a parenting failure, and that solicits a highly emotional response. For my mom, it's an inability to have an honest conversation because she can't get past her own emotional reaction. For my dad, it's characterized by facial expressions of disgust for incision lines juxtaposed with what he assumes is my pain. And the ultimate one-liner -
"you have to just deal with it".
Their reactions are not attunement. Their inability to have an honest conversation with me about my treatment plan and costs is single-handedly hindering our relationship from evolving. And it indirectly impacts James' perception of his in-laws. They're not the first family members we could call in an emergency.
I attempted at the suggestion of my therapist to redirect my mom's visceral reaction. She has the ear of someone in politics who could take the carefully tracked costs, insurance coverages, and frequencies of treatment to capitol hill. She has the opportunity to create awareness, instead of succumbing to the visceral emotional reaction she has to anything medical. But she refuses. I can't imagine why she refuses, but I can imagine the compounding stagnation she must feel. Coupled with our (James' and mine) choice to distance ourselves instead of participating in disingenuous conversations where we continually talk about the same six things.
My parent's choice to not educate and inform the family of the life-long battle I would go through has cost me dearly. Some relationships, I can remedy and build upon, others are lost - like the one with my only sibling. Subject for another day...
Does all of this maybe impact my attunement preferences? Absolutely. Is it something I'm working through? Also, absolutely. But I am explaining my preferences and my boundaries very clearly in this post. If I were not okay, I would definitely let folks know. If James needed support, he would also, let folks know.
James and I are a team, we are capable of weathering the storms of treatments. It is a reality of the diagnosis. If you want to be more attuned to what this experience is like - think about the number of appointments I or anyone like me has annually, the number of treatments, medications, physical therapy, mental health, and so on. Quantify it, time, gas, co-pays, follow-ups, etc.
Think about it in relation to the US healthcare system and let it make you angry. Let it make you angry that there are countless people who have to navigate an overly complicated world just to get the bare minimum of treatment covered by insurance companies. Let it make you angry that not all healthcare is created equal - your level of coverage is heavily dependent on your employer, and your actual coverage is determined by whether or not you're actually employed. Think about if you're planning to have a family and you or your child end up with life-altering complications.
We certainly think about it, almost daily because of the long-term impacts it will have on both my life, and our choice of becoming parents.
Take your attunement a step further. Instead of saying, I'm so sorry, put yourself in another's shoes, and expand past what you see. I guarantee you the depth is much more than you ever realized.
With brutal honesty, wrapped in good intentions,
Disclaimer: As always - I write with a heavy dose of satire. My blog is a reflection of my voice and my experiences. It should in no way be taken as medical advice. If you feel a kinship with my patient journey or feel that you may have #HS, please seek out a licensed dermatologist with experience treating the disease.