Although it’s an inescapable reality, I try not to write much about or dwell upon my life as an M.E and chronic illness sufferer.
It can feel intrusive enough already.
Each day brings fresh reminders of pain and limitations.
A life framed by feelings I’d rather not have.
They can make life miserable indeed.
Though sharing misery is not really my goal or mission at all.
My emphasis is more on God’s grace to sustain, strengthen, heal and restore than on how it feels to be sick.
But I am making an exception today by sharing a poem that was originally featured on my other writing place Words of Joy and is mentioned in the current post there.
It was written at a time when society’s impressions were being greatly influenced by governmental views and decisions and is very much a poetic lament in support of all who live with such experiences.
Sadly, there has been no let up since.
It speaks of the unwarranted stigma and shame that sufferers can experience.
I hope you will come away from reading it feeling better informed and aware, with some insight into the lives of those with ‘invisible illnesses’.
I’ve been framed, boxed, categorised,
sifted, found wanting in society’s eyes
I’m not the woman they think they see,
but an inner person that’s really me
Viewing the image the mirror provides
if I dare to risk, turning away with sighs
Decades of illness have left their mark
and it’s hard to bear living in shaded dark
My eyes need rest I urgently seek,
the brain is foggy, body made weak
Pain and deformity cripple the frame
and it’s hard to remember inside I’m the same
A woman with dreams and a heart to express
all that’s buried within, though under duress
I want to be seen as I feel inside
but external appearance causes me to hide
Days without number I face my fears
that grow as hard to scale as our home stairs,
that this won’t go away and I might not be healed
that the inner joy may be forever concealed
For it’s hard to stay cheerful, harder still to be bright
in a world that pushes us out of sight
We’re the invisible people, out of the game
our only identity is pain and shame
Huge in number, if weak of voice,
the nameless ones who cannot rejoice
until labels and badges no longer apply
and we don’t have to keep asking you, “Why?”
Why not believe us, why not accept
this could happen to you, being sick and wrecked
Your body a tomb for a spirit that’s chained,
a livelihood lost, prison sentence gained
Eyes that accuse, hearts that are hard
do nothing but continue marking our card
Treated with scorn, hostility, derision,
our whole future residing on whim of decision
Fear haunts our days and disturbs our nights,
energy drained further to keep fighting our rights
Please, won’t you listen and heed the weak
as you hear our stories of the justice we seek?
Please remember we are people too,
not numbers, statistics, a warped world view
Lives are at stake as bodies fail,
strong in intent, though our hearts quail
Life in the Slow Lane can be no life at all
when it grinds to a halt against a brick wall
If you know someone who has M.E,
please help them and tell them you see,
you witness their pain, you understand the need
and you won’t turn away, you will pay heed
All we ask is for people to see who we are,
recognising this disease will take us far
into a future where compassion can reign
instead of resentment, sadness and shame
Despite the negative tone in the poem above, I am very much kept positive and hopeful by God’s continual outpouring of endurance, strength and love. Some days may be really challenging but His grace is always sufficient for every need.
This topic is being aired today as I am guest posting on my friend Mia’s site. I’d love you to come on over and read the full post here.
Day 5 of 31 days of #poetryforthesoul
4 thoughts on “Being framed”
Well and honestly expressed, Joy. It’s bad enough to feel betrayed by your body, but when governmental agencies and insurance companies resist validating your condition as real because of concern for the monetary impact, the medical establishment is bothered by something that is only a diagnosis of exclusion reached after ruling out everything else, and cannot be seen, disproven, or “fixed,” and the people around you only believe what they can see, (“but you LOOK healthy!”) it has to be disheartening. And you are still you, the same person you’ve always been, but now your mind is writing checks your body can’t cash. How frustrating that must be! Thank you for being so transparent today. You have accomplished, I think, what you set out to accomplish here, and given us all a little glimpse of what it’s like to live in your skin, you and thousands of others for whom you speak. Well done!
You say it in a nutshell, Neil, and with deep empathy and understanding. Yes, it is humiliating and frustrating at times. When I wrote this lament it was one of those times! Bless you for your sweet encouragement. I really appreciate it. Thank you!
Not dwelling on our pain, our invisibility, and all the things you mentioned is good in our daily life. And the truth is that we never know exactly what people think unless they tell us, but we see what we consider to be inferences. I think the fact you share the Negative and the Positive is a good thing, because it helps others deal with their own afflictions. It helps them to know this: “I am not alone. Someone else understands.” This spoke to me mightily today, as I had begun to feel more depressed from the relapse I have been experiencing. I had begun to think I could not carry on in my ministry to the afflicted. I feel selfish because I have so many “I want to’s.” I think I could make a long list if I wrote them down. And, I have had a new confusing symptom. Oh Joy, I could do on and on, and it sounds like complaining. I hate to do that. Thank you for being you and sharing as you do.
Lots of love and blessings. xxoo
Oh, Debby, I do sympathise. I also have a list of ‘I want to’ s as long as my arm! Living with invisible illness and incapacity is dark and difficult a lot of the time, but we always have hope in the midst of our trials and God brings beauty from the ashes of our lives. All those disrupted hopes and dreams become something lovely when surrendered to Him as He works in everything for our ultimate good. It may not look like we anticipated but it will always be part of His greater purposes in our lives.
I’m really sorry you are struggling so much right now. May you find peace as you rest in His loving embrace and let go of the fear, frustration and pain. You’re not being selfish at all in wanting more for your life. It’s a God-given ideal. And He will bring you to that place where it’s a reality in one way or another. Blessings, love and prayers Xx