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My Experience With Prurigo Nodularis And How I became A PN warrior

Prurigo Nodularis, a rare skin condition, is in itself is difficult to deal with. People's lack of empathy adds to the burden, but, there is hope.

Prurigo Nodularis, a rare skin condition, is in itself is difficult to deal with. People’s lack of empathy adds to the burden, but, there is hope.

It was 9:15 a.m. I was in a train station, ready to push my body inside the overcrowded local. And that day too, I masterfully jockeyed through hundreds and somehow went inside, with my bag and baggage intact. I stood near the footboard and carelessly placed my hand on one of the brown handles. The chipped paint on it revealed the metal underneath. The sun was particularly merciless that day and the heat from the metal seeped inside my body, almost burning through every fibre of my fingers.

“Ouch”, I winced, and moved my blistered fingers, placing them gingerly on the protruding side bar. As I held on to it, I turned my gaze to the usual landscape that swiftly passes by during my daily half and hour journey to my college. The dented lonely rickshaw, the lumbering buses, the thronging crowd in front of a small tea-stall,  the wild profusion of dense green land and numerous huts that looked they belonged to a toddler’s sketchbook.

The train I take is usually crowded. However, that day,  by only the third station, half of the crowd had poured out. A whiff of warm breeze whistled past me and a nauseating scent of filth mixed with the dense foliage assaulted my nose. I sensed familiarity. Déjà vu perhaps! I felt a pair of eyes watching me, scanning my arms and settling their gaze at the skin that lay uncovered by the sleeves of my top. I looked straight at the eyes that were on me, and they turned away in an instant. Flushed with unrest, they looked as though they had seen something unexpected. The clamour ringing in the person’s mind made the eyes to land yet again on my arms, only this time the eyes compared my arms to my face. This ‘oscillation’ happened for a good minute. Without really thinking, I jumped to claim some vacant seat. I set myself to rest and heaved a sigh of relief that a warrior releases after battle.

Another pair of eyes landed on my arms. The eyes screamed disgust and what they saw pushed their owner to move further away from where I was. She was a red-haired lady whom I would encounter in my daily commute quite regularly. She briskly whispered something in hushed tones into her neighbour’s ears. The other lady stopped whatever she was doing and craned her neck to see both my arms. Both of the women twitched and twisted their countenance in disgust and horror. Another passenger, a mother of a two year old, swiftly grabbed her baby’s fingers when accidentally they brushed against my wrist. Almost reflexively, she got up and sat on the other side. The toddler’s eyes were brimming with innocence and he couldn’t fathom the reason behind his mother’s rapid movements.

 Making peace with people’s disgust

 I have Prurigo Nodularis (PN)  and it is not a communicable disease.

I have PN and though there are black spots on my arms, my heart is as white and pure as a fresh blanket of snow.

I have PN and I could go on about the sleepless nights spent, not mooning over some crush, but fighting, hard.

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If only you bothered and cared to understand, PN is an autoimmune condition but that doesn’t mean we are immune to your ignorance.

But who can blame people for exhibiting disgust? Who can blame my friend’s dad when he said, “Congratulations for your good score but interviewer might lose interest when he sees your skin condition”? He said it nonchalantly, though his words seared through my PN affected skin and broke me into a million pieces. Who can blame those eyes, which forgot the chaotic turmoil and despair caused by the local, and land themselves on my arms? Can I blame that classmate for making stinging remarks, “You know if you eat anything lying on ground, you will get what this girl has on her arms.” Who can blame these people for ruining my confidence and hope like a house of cards? Or worse, who can blame these circumstances which came to me like a slap from destiny?

Though I cannot say I have completely moved on, I have made my peace and it was a lot of work to reach up at this point.  Am I not angered anymore by those words? Am I all zen now? Not completely. The stinging slap of fate hurts sometimes because it’s impact is deep enough to torment my soul and it is etched in my memory. But I have so many things to look forward to, so many people in my life who radiate positivity and glow in my life that it doesn’t matter anymore.

I don’t blame the people who were disgusted by my arms as our beauty-hungry eyes would definitely want to sooth themselves with pretty things. PN doesn’t satisfy that hunger unfortunately.

What is PN?

PN or Prurigo Nodularis is an autoimmune skin condition which causes multiple hard itchy lumps to form on the skin. Pruritus means itch and it can be mild or intense, causing people to scratch themselves. The scratch further leads to more lesions to appear on the PN affected areas. The cause is unknown and studies say that mental stress is one of the factors that contributed to an itch-scratch cycle.

Treatments may be topical or oral and can include cryotherapy or phototherapy, depending on the severity. While all these are available, one cannot be certain that these can give the desired results, as in the end, it depends on an individual’s body. Also, every PN is different and studies are underway to find a general cure for this rare condition.

While research is underway and treatments are being developed, doctors are not very efficient to put the semantics (what they mean) to utterance (what they say) in a more respectful way. The doctor’s magical words “You are doing this to yourself” are often the first thing one hears when one walks into the doctor’s cabin. One walks in with a glimmer of hope and walks out in despair and with a resigned conviction, believing that this is our own doing.

Making sense of what Doctors say and figuring out what they actually mean?

Given that doctors are not able to articulate effectively what they actually mean as is evident in the harsh words they use, take them with a pinch of salt. “You are doing this to yourself” does not necessarily mean this condition has happened to you because you have scratched the lumps and that therefore you yourself are the cause in bringing this condition to your skin. No, that is not the case. They actually mean that this condition invites itch without any reason and itching doesn’t help, but rather aggravates. They can put it this way, “The itch is the culprit and you are not. It is not your fault”. These are the words we yearn to hear when we are inside that cabin, aren’t they? Empathy plays a major role and a doctor’s room should have it in plenty.

Be the change you need – Healthy choices are crucial

Adopting sustainable choices are crucial and must be made part of your routine-

  1. Diary and Sugar in moderation – Sugar and milk products aggravate PN and these are some of the foods which trigger autoimmune flare-ups. That doesn’t mean every person affected by PN should stay away. As I said earlier, PN reacts differently in every body. Histamine foods are generally to be avoided as they cause the vicious cycle of itch-scratch. Sugar and dairy are among the histamine foods and don’t often gel well with skin issues so be cautious. Having said that, take doctor’s advice and listen to your body.
  2. Divert and disperse – Stress is an important factor in every skin issue. While we cannot do away with or avoid stress totally, we can certainly control the level of stress. Yoga and Meditation are holistic methods but one can follow their passions and hobbies to exercise control over their stress hormones. They may magically divert your attention and disperse dark clouds of worries, which may trigger the itch.
  3. Keep your hands busy- Every PN warrior would agree that PN is a disaster during the night. At night, ordinarily, we get to relax and repose after the daily drudgery. It is also the time when our hands are at rest. And that’s when the stimulation to itch forms in our brain. While we cannot avoid facing the night and we can put all our trust to food for help, we can definitely manage our day time itch. Take up things which require your hands the most. Writing, sketching, cleaning and decluttering, or playing an instrument etc., are some of the activities which will ensure your hands are always at work.

Social media and Support groups – vast expanses of help 

Understanding other people’s pain is empathy, which makes the pain becomes much easier to face and get through. Social media and support groups have given me lot of strength. Every post of the sufferer whose lives are fraught with struggles made me realise that my PN pales in comparison to other’s PN. So, there are genuine groups created by empathetic individuals, who seek to spread awareness about this rare condition and offer support to PN warriors. They have a lot of tips and advice to offer.

What works for others might not work for you and that’s okay. That doesn’t stop us from trying and these groups offer truckload of information pertaining to this disease. Read, make yourself aware, and keep your effort focused on working out tons of methods to make this condition better. Remember what other sufferers could understand cannot be understood even by a doctor treating this condition, as the sufferers are walking the same path, which is fraught by the demons of PN.

In conclusion, dear PN warriors,

PN is a condition that requires immense mental strength. You all have that in plenty so you can walk this path. It should not get the best of you. It shouldn’t own you. The reins should only be in your hands.

Every soul has blemishes, regardless of whether they are PN affected or not. PN warrior’s blemishes are more easily seen.

And so I leave you with a few lines by Emily Dickinson,

“Hope is the thing with feathers

That perches in the soul

And sings the tune without words

And never stops at all”

Undoubtedly a soul of PN warrior requires hope in abundance!

Image Source- Canva

 

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About the Author

Saranya Iyer

A writer/Educator and Spanish Language trainer. Loves Reading, Music and Art. Favorite Author is Jane Austen who inspired me throughout my writing journey. I mainly write on Drama fiction, social issues, relationships and parenting. read more...

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