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The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question

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Reprinted from jeanvieve7.wordpress.com with the kind permission of Jennifer Steidl. To read the original article, click here.
 
The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question
 
Nobody is normal.
 
Everyone is unique.
 
That said,  long term illness changes a person; it changes your mind, your emotions, your perspective, your way of thinking… to say nothing of your body.
 
And the places in your mind that change can be impossible to perceive what is caused by the physical (hey come on, LITERAL viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me even with the deepest introspection lines are blurry).
 
So when you are in this bubble of misery and feeling desperate; many of us reach that crossroad decision of whether to reach out publicly or not. Now some do so all the time, and some do so seldomly. I want to share with you, the healthy person, the “normal” person, what goes on in our heads and where the need to reach out comes from. Because to you seeing our (sometimes frequent) posts regarding how we are feeling physically and mentally can come off as….
 
Desperate
 
Attention-getting
 
Overly dramatic
 
Whiny
 
Ungrateful
 
Emotionally unstable
 
Lacking faith
 
Hypochondriac
 
Lacking strength
 
Or “_____” fill in the blank
 
And honestly maybe some chronic illness sufferers are. BUT, I am asking you to consider grace, and here is why.
 
Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You DO stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, your life may not be perfect or exciting, but it is full.
 
One day your body starts to betray you. Suddenly all the normal daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years.
 
You start sleeping a LOT more, so much more you start to feel guilt over your laziness. Even after a full night sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.
 
So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago.
 
Oh and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain.
 
Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bed time and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep….Now it feels like that ALL the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.
 
Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you feel dumb as you can’t seem to formulate articulate conversation.
 
As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.
 
You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.
 
Your world grows smaller.
 
As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy.
 
At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!”
 
… you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…. your friends start to drop away, they check in on you less and less, they stop inviting you to things because they know you will just say “no”.
 
Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.
 
You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life. 
 
Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You feel a little “crazy” and desperate and sad and lonely. Since you don’t see people in person so much anymore you reach out to your friends online; both your real-world friends and your friends who you have now met in your chronic illness forums and such.
 
So I am speaking to you; “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention”, talking about what they are going through very publicly (sometimes) going into TMI territory…. know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were.
 
They post because:
 
They want fellowship,
 
They want friendship,
 
They want to both hear and be heard,
 
They need a sounding block,
 
They want to feel normal,
 
They don’t want to disappear and be forgotten
 
They want to have a glimpse of normalcy and online may be all they have
 
They don’t see people much face-to-face so “face”-book is their life.
Hear me now as I write this for my sick brothers and sisters!
 
Everyone needs people! When you are sick and isolated online is your people!
 
We are not grand-standers or attention getters (at least not most of us) we are people just like you who have had our lives changed and shaped by our illness and our circumstances. All we want is to be normal and healthy. We covet the little things that most people take for granted; even just taking a walk on a sunny day.
One more thing I want you to know; worry about the chronically ill people who don’t post and instead stay quiet. They are experiencing everything the communicators are, they are just internalizing their pain versus reaching out. 
 
It is: Having an outlet, versus internalizing everything
 
Isolation, versus reaching out
 
Honesty, versus putting on a happy face
 
I have seen too many of the “quiet one’s” obituaries online, (self inflicted.)
Please also know the  anxiety we go through on what to post and what not to post.
 
It is SO hard to judge because (especially) on a bad day our perspectives are askew… and the reactions we get from people also vary greatly.:
 
You get the positive feedback from the chronic illness community;
 
 “thank you so much for sharing, I am not alone”.
 
  “so glad to hear another person’s perspective”.
 
“Thank you for being honest and blazing a trail for others that will come behind you.”
 
This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of suffering.
 
But, you also get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you….
 
In closing; why am I posting this? I will tell you it’s not for attention or sympathy. I am giving voice to the silent suffering ones. I am advocating for those whose families don’t believe them. I am opening a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member.
 
This seems like a good day to do this, Christmas Eve when hearts should be open, love should abound, peace and charity reign over all else ??


My name is Jennifer, I have spent the last decade or so battling various health issues from gastrointestinal, to chronic fatigue, to fibromyalgia, to adrenal trouble, to chronic edema and much more. It took years to find the culprit to be Lyme disease.  Lyme has cost me emotionally, physically, financially, mentally and socially.

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