For those awaiting a label

Posted , 4 users are following.

Many of us already diagnosed will remember this and those awaiting diagnosis may identify with this. I posted this a couple of years ago but it's still relevant I think:-

Those early days when we think we are going mad or just hoping that the next appointment will bring with it the answer to what ails us:-

The bud of anxiety now blooms within my mind


Today  I learn, or maybe not, of the label to be pinned to my lapel

I am still the person I was yesterday

Except today I will be pigeon holed

Along with others in one select club or another

Or maybe none

Do I wish to know where I belong  or rather go on as before

What difference will a label make?

I am still an individual

Will the label own me

To tell or not to tell that is the question

What is said cannot be unsaid

Will I become that person with such and such an illness or

Just me who happens to have x.y.z.

Perception of others

Will it change or remain unaltered

 As ever time will tell.

2 likes, 11 replies

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11 Replies

  • Posted

    All so true and unfortunately we are certainly viewed differently by others and labeled with unfortunate titles making one feel quite isolated.

    It seems in my case to be even more complicated with other unexplained health issues, does the medical merry go round every stop? Sorry dont mean to sound down, love your poetry.

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    • Posted

      I have decided to get off the merry-go-round and take the bull by the horns and do my own thing.  The drugs offered to me were worse than the problems.  I now have my own regime and feel happier being in control.   I have a friend who was so upset when her child was diagnosed with a condition which was evident from birth.   She could not, in her grief, understand that he was still the same little chap and nothing had changed personally for him except the doctor had given his problems a label.   I don't personally like labels but they are essential to gain access to care for those who need it.   I have a sticker in my car which says not all disabilities are visable.    My mobility issues obviously are but my friend's terminal cancer is not. Unfortunately society is generally self centred, self obsessed and intolerant of their fellow man.  We are fortunate in being able to vent our views and frustrations on sites like this where other members understand our daily battles just to survive the day.   I always try and speak to at least two people when I am out and about because we never know what is going on for them in their lives and that one conversation might be the only one they have that day and a kindly word may make all the difference.  Chin up Meg - darkest time is always just before dawn. Do hope your merry-go-round ride is soon over.

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    • Posted

      Thank you Maggers, you are a very wise person and I appreciate the emotional support. I am so sorry to hear about your friend, cancer really seems to be such an insidious disease, I hope all the research bears fruit soon.

      You very bravely manage without medication, I wondered how you dealt with the sleep disorder part of Fibromyalgia, a major issue I wrestle with when having a flare up?

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    • Posted

      Sleep side is always a problem.  Dead sea salt or epsom salt baths. I put a onesie on because I dislike tight clothing when fibro is bad. Put a pillow between legs which helps keep hips open. Memory foam pillow and mattress, classical music on low or a talking book and dark room.  Can't say it works every time but at least a couple of hours before  pain wakes me is a bonus. Lavender is very calming if you can stand the smell.   A vet friend of mine uses it regularly on clothing to help reduce stress in the animals she deals with.

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    • Posted

      Thanks Maggers yes I find talking books really good for relaxing and I have a gel mattress topper on our bed to help prevent the pain in my hips and shoulders etc. Lavender I can't do as I can't tolerate strong scents. I also take magnesium supplements at night. I have even been known to take a mattress topper on holiday with me, other people take extra shoes or clothes  I take a humble mattress topper😀

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  • Posted

    I prefer the label

    differently abled

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    • Posted

      I prefer my name as my label.  I hate it when my boss tells people that's Mags and she has issues. I often wonder what issues people think I have after such a statement.  It should be up to me what I tell people, if anything.  I do not need to justify myself to anyone and I dislike her trying to do it for me!

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  • Posted

    Today I have seen my GP who has told me that my pains etc are indicators of fibro along with osteoarthritis. Prescribed me gabapentin and topical gel for my joints. Getting referred for xrays for the osteo. But am rather unsure as to how to proceed with anything. Can someone please help.
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    • Posted

      Hi, depends where you are but generally speaking rheumy will diagnose fibro. I have osteo too.  Chiropractor is the best thing I have found for osteo together with some physio to make sure your posture is corrected as much as possible.  Had surgery on my ankles which helped with mobility. Sometimes I find it hard to decide if it is fibro or osteo causing the pain!      Don't expect the rheumy to be quick with the diagnosis though as they will want to rule everything else out first. Stay positive and use the fibro folk on here who are only too willing to lend a listening ear and give their advice.  In the early days we all have many questions.

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