Help Wanted

***I’m going to be bringing some older writings to the blog sometimes. Many of them have been what has helped me process my life in a way that has helped me now.

Below find a writing from July 2024 and, at the bottom, a brief note from Shandra February 2025.

Written July 2024

It took a turn yesterday.  I’ve been living with invisible illness most of my life.  Really, take your pick:  mental illness, fibromyalgia, IBS, Dercum’s disease, Ehlers-Danlos, Thyroid issues, newly created insulin resistance, severe pain disorder – a grab bag of conditions and illnesses that could bring me to my knees if I were to let them.

I was surprised that not everyone had disease like this, too. “What do you mean you’re not in pain all the time?”

I’ve been navigating quite well, actually.  Just trying to outrun the monster that is always in the shadows.

His name is “sick”.  And he’s an asshole.

Sick makes me tired at the most inopportune times.  The fatigue running wide and deep.  He makes me hurt.  Deeply hurt. 

Hurt in a way that knocks me to me knees, (would if I thought I could get up again) and makes me question most of my life’s decisions.  Hurt that burns, aches, and stabs, all that the same time.  He makes me trip as he laughs at my ability to balance.  He fogs my brain as I try to remember a word, a commitment, a conversation.

I have a lot of conversations that I don’t remember I had.  I lot.  It makes it very difficult to navigate my high-level job.  I forget I talked with someone and they refer to a conversation that, for me, didn’t happen.  And then other times I remember crazy-stupid stuff.  A strange encounter.  A story someone told or a meeting we had or someone’s favorite music. 

Sick laughs every time I’m uncomfortable because I can’t remember something I told you. 

He’s going to love it when I can’t remember your name. 

I’ve spent a lot of my energy in my life trying to pretend that, not only am I fine, I’m the best I can possibly be.  It works out well because I like doing things for people.  I like creating space for them, carrying and setting up tables and chairs for meetings or meals.  I like creating outlines that I facilitate in fantastic fashion.  I like being a professional with heart.  Almost like a magic trick, I think.  Look over here and see all the things I’m doing to create this sacred space for us and don’t look at my grimace, my slow walking when I stand up, my limp.  Don’t look at me sneaking my pain medication when my pain has become intolerable.  Don’t “check in with me”.  It knocks me off my game.

So now, now that sick has is becoming visibly disabled, I’m not sure my slight of hand will get me far.  In fact, it will look desperate.  Which I’m feeling this very second.  I feel desperate.

I’m not sure how I feel about becoming someone with a visible illness.  My illness, much like MS, ebbs and flows.  One day I need all the accommodations and supportive tools I can get just to function.  Another day, I’m totally fine and you would doubt the premise of my whole story.

The leap from invisible ( or even hidden) illness to visible disability is painful.  It takes some mental work to realize that what I’ve kept from you or from the world is now your business.  I now have to have conversations with people I really didn’t want to have.  I now have to belong to people’s gaze and misconceptions and judgement in a way I didn’t before.

I asked my doctor a few months ago if I should quit my job.  I was in that much of what I call a “pain crisis.”  I wasn’t doing great with my mental health.  I wasn’t doing great at my job.  I wasn’t doing great at being a functioning human being. 

Like I said:  Crisis.

She said that when people quit their job, they decline rapidly because it takes away what they like to do (if they’re lucky.). And I’m really lucky.

It takes away meaning in their life.  Which is what I need more than ever.

That conversation, and her compassionate and firm direction, catapulted me into the next phase of being sick.  I knew that when I told people:  I have a rare genetic pain connective-tissue progressive disease, I would someday have to acknowledge or deal with or confront or be directed by the word progressive.

A little clarity – rarely, when telling people about Dercums, do I use all the words or descriptors.  It feels overwhelming to me and, if I were them, I would start dozing off after one or two.  The one I leave out the most is “progressive”.  It feels like I’m either asking for pity, or I will be soon.

I don’t think I’m asking for pity.  And I don’t think I want it.  But I know I don’t want to be alone in this.

Help.     

Written February 2025

Looking back at this, I really see my wrestling with whether or not to quit my job.  And I am also wrestling with how to be honest yet authentic in my disease journey.

With work, I went to 20 hours a week in January and I’m loving it!  I haven’t had any sense of not being a functioning human being.  So I’m glad for the writing above.  Glad to know it helped me navigate that difficult decision.

Also, my memory is significantly better! I’m so thankful!