There are so many different support groups and so many different sufferers and it always surprises me how different we all are.
Everyone who shares their story and struggles will either find someone who can relate to their situation or they will find someone who may be worse off, there is never any way to tell.
I can understand why able bodied people can become confused when they know person X who has an illness and yet they are working and holidaying and no one would even suspect they had that illness… and then there is person Y. Person Y is bedridden and rarely goes anywhere. They struggle to do the basic things … but they have the exact same disease!
How can this be true?!
Surely someone is lying and just trying to get attention?! … sadly that’s what most people think but they possibly don’t not say it. At least we hope they don’t say such ignorant things anyway, but often times a lot of people do say such things and this is one of the number one problem that the chronically ill face; Shaming and bullying.
However. Aside from the general public not knowing the truth and engaging in such hurtful speculation, it is also true that many sufferers don’t understand and struggle to accept why their illness has been more disabling than someone else’s.
It can be really hard to accept.
You see we all want to be as high functioning as we can. We all want to have the best mobility we can have and the best quality of life that these illness can allow. But we are all so different!
Rarely are two sufferers in the exact same place on the scale at any given time. Ever.
I spent a lot of time wanting so much to be in the higher end of the functioning scale. I struggled to understand why some others were able to do more and were in less pain. I felt a failure and I felt so alone.
What was I doing wrong?
I tried everything… And I do mean EVERYTHING!
I still see many of my fellow sufferers able to do so many more things than me and live with much more quality of life and I truly wish that was my story too. But it isn’t.
And then one day I met someone who had very similar symptoms to me and was struggling as much as me and it felt strangely… wonderful!
Like finding a long lost friend!
I wish we were not in a similar situation but I was also glad to have someone who finally understood some of how I felt. A real soul mate.
Why does this happen? Why are some people seemingly more affected than others? Why are some able to achieve remission? Why can some people walk and drive and work while others can barely move? No one knows. Not even doctors!
Some say it may be due to when they were diagnosed, or how quickly they got medications, or how old they were, their genes, their backgrounds … I believe it could be all of the above or none. Maybe it’s just dumb luck!
We all have a different story and we all have very different paths with these illnesses. There is no way of predicting which one you will be or where you will end up. So many different possibilities.
Whilst I wish I was so much more able and higher functioning I can not do anything but somehow try to work with what life has handed me.
I didn’t want one of these diseases and yet I have been diagnosed with several! It seems so unfair sometimes… And it is.
But that is how life goes.
Sometimes accepting that we all have different stories is as hard as accepting the illness in the first place.
All I know is that I don’t want to add the pain of comparing myself with other sufferers to my already difficult circumstances. I work very hard at being happy for those that are at a better end of the scale than me, and focusing on how I can still enjoy the life I have.
5 thoughts on “Different Stories.”
This is a very important topic you’ve raised!!
I was guilty of forcing myself beyond limits looking at others living almost normal or 50 % functioning lives with Dysautonomia…
It made matters worse on my body. Then I came to a point of realisation .. spoke to myself & said hey listen to me!
You are doing the best that you can & it is enough. They don’t have heart failure, they don’t have such & such symptoms…. Their level of disability differs from yours & it is lesser so stop trying to think you should be function on the same level when just talking is considered athletic in your situation.
It took long but over time I stopped looking at others. Now I focus only on myself, what I can do within my own capabilities & being satisfied with all that i achieve.
We might have the same / similar diseases but the nature & intensity of each one differs.
Be. Do. For. You.
Thank you for this post & sorry for all my rambling lol.
I’m glad to see someone discussing the aspect of shaming & bullying.
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Oh so true!!
We all want to be higher functioning but that isn’t always the case and it ISNT your fault. That’s the biggest thing to accept.
It is so so true and I worsened my situation trying to do more than my body was able.
It is a real skill to be able to accept your own situation and still wish others all the best.
And not blame yourself.
It took me years and I would be lying if I said I didn’t still wish things were different.
But it helps when we meet others that understand.
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You always seem to be able to articulate,far better than I, my inner most thoughts and fears/questions etc.
Maybe I’m finding myself in a similar place of acceptance or seeking guidance or true understanding from someone whom I feel finally truly understands the endless inner struggle with trying to balance what we want and expect from ourselves and the actual reality of how much effort it takes to actually achieve that…
The last 3yrs have been some of the most testing out of my 30yr struggle, but I am truly grateful to have found you and to finally feel that the generosity you have already shown me, has given me a safe place to share my concerns with understanding and no judgment 🙏. Another thought provoking and well written peice my friend. I look forward to getting to know you better….
Hugs Alex 😉 xxx
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My pain is greater than yours, because,, well because I can feel mine. Since I cannot sense your issues mine must be so much more important. Like my mother used to say you can’t lose what someone else posses. Nor can I feel what others feel. If I cannot feel it perhaps I should not try to judge it. After all I know my mother would not be pleased if I did.
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