One of the biggest misconceptions that many people, strangers and a great number of health care professionals make about me is that they assume that the longer I have been sick the easier it must be to not want to do anything. Wrong! … and that I must just struggle to want to do things. Wrongagain!
I can honestly say that these assumptions are complete and utter rubbish!!!!
I hope that this piece will debunk that myth once and for all.
One of the most heartbreaking part of these diseases for me is that there is still so much I want to do inside me. However, It is trapped inside a body that struggles just to even exist.
My will to do things is not waning. My body is.
As I watch so many people going about their lives and doing what they consider to be boring or repetitivetasks, I long to be able to do such things. I even Fantasize about them.
So many people bang on about how the chronically ill appear to lose their drive, motivation and desire to do things and although I can’t speak for others, I find this to be utter nonsense in my case. I have had to learn to ignore, turn away and allocate these people to the ‘haven’t got a clue’ basket. Because they don’t have one single clue … and may never have.
If they could spend a day in our home they would have their little bubble of ignorance burst.
If you have been ill for long enough the chances are that you will also start being sent to psychologists or psychiatrists who will encourage you to start making dream journals and writing down ‘things I achieved today’. I imagine it is for the purpose to encourage you and motivate you to live more life and be grateful for what you have. They seem determined to convince you that you are becoming unmotivated, ungrateful and lazy, however I can’t help but find it all condescending, annoying and ignorant of the truth.
I don’t lack inspiration and imagination, I lack functionality.
If someone really thinks I am going to start a journal and write down my goal for the day as i.e. eating my food on my own without pain and nausea, then I think they clearly have the wrong woman as a patient. I simply can’t write such things down and won’t. I find it more than a little embarrassing and even childish.
That doesn’t mean I am not a grateful person or emotionally mature! Far from it. My illness has given me insights and gratitude that I never had as an able bodied person and that I rarely see in the general population… And that is the point!
One of the hardest parts of these diseases for me has been managing a very personal battle between the inner person who wants to do so much and the outer body that can do so little. It is pure hell.
The only ways I can manage to do even a portion of the things my mind imagines and dreams of is with the help and physical assistance of my husband.
If I want to plan a garden it is up to him to do all the labor and everything I can’t do from my bed or chair.
This places a great burden on him because he must be his own person and my body too!
If I want to plan a trip, it falls to him to arrange everything, aid me, organize day to day things, care for me when I am in agony, and then bring us home safely.
He is the body that I don’t have and it breaks my heart to have to rely on someone else for this amount of help. I hate it.
Am I grateful for his help? Absolutely and completely. But I am also deeply saddened and desperately disappointed that this is what life has come to.
There are no memes or positive affirmations that eases or takes this heartache away from me, and I think it never will. Despite the times I do anything and everything I can to try and claw back some abilities of my own, the reality is I only seem to make my situation worse and my suffering multiplied.
A significant number of Autoimmune’s share a background of type A personality and therefore are some of the high achievers and intellectuals in their former lives (AARDA), therefore we seem particularly vulnerable to struggle with these diseases that rob us of our abilities to do things and reach our goals: which is a big part of our nature and personality.
Beyond the bone breaking pain and the all the physical hardships I encounter, I find the emotional pain some of the worst aspects to deal with.
Perhaps others relate to this too?
4 thoughts on “The greatest Myth of all…”
I say the longer I am sick the easier it is for those who forget about me. It is easier for them than to see me hobbling around. I adore those who remember me and I adore those who see me voluntarily even more. I guess I am good with that.
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Yes it really does make us look at things in entirely new ways. And make peace with what we can x
Trish, it’s like you literally pulled those EXACT THOUGHTS AND FEELINGS out of my head, heart and soul.
You so eloquently articulate my inner voice and seemingly endless struggles that you give me inspiration to battle on. As I’ve been saying so often lately as I’ve been put in the situation where I feel the need to justify everything I go through. I’m not living, I’m just existing!
As you say, as time goes on, my desire to accomplish even the most meanial of tasks, only grows but the constant disappointment of not achieving them is soul destroying!
I find myself becoming hardened and defensive, the more desperately hard I try and for someone to even infer that I’m not putting in the most mammoth of efforts, is so incredibly painful and hurtful.
I feel trapped in a body that continues to fail me and just the constant struggle to find the continuing resilience is so physically and emotionally exhausting, that so many others can’t even begin to comprehend the strength, willpower, guilt and pain we feel….
I often fear voicing my inner most thoughts and feelings as so many interpret that as me being pessimistic or somehow sabotaging any progress that might miraculously occur.
I just feel that I’m finally trying to come to a place of acceptance instead of aimlessly trying to push my body beyond it’s limits, that have become only more and more aware to me as I’ve tried to please others with goals for myself that I know only lead to disappointment and feelings of failure.
I don’t consider that…. giving in. I consider it trying to accept my reality. I HATE IT ! Of course I would change it and live the dream in my head if I could, but I’m the one that lays there in the dark, at 3am, in agonising pain. To be so entirely dependent on others. For me it’s my wonderful parents, breaks my heart 💓 and I only wish others could spend even ten minutes in my body, and see how they managed to cope…
We can only do the best we can. Take each day, hour by hour or sometimes minute by minute.
Thank you for giving me a voice 🙏
Alexandra Lee xxx
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