“Invisible” health conditions

I do think people think if you look well then you are well. For people to believe you are ill it's presumed you will be pale and thin.
I am neither pale nor thin.
I have osteoarthritis in both hips and some collapsed discs in my back and it can be very painful.
I don't think people understand unless they have had all the conditions that others have mentioned.

I have multiple comorbidities, most of which are invisible.

I always look so well, only those who know me, realise how much I am struggling.

The other day, I told a parishioner that I couldn't do something for her, because I was unwell. She stomped away, turned back and said, Well you don't look ill to me. 😪

Jane43

Our niece has had ME for many years and found it frustrating in the early years that nobody recognized it as an illness. I have always wondered if it is linked to trauma, in your case Cossy a traumatic birth and in our niece’s case her husband committed suicide when her sons were 7 and 4.

I truly believe it is linked to trauma of all kinds, physical, emotional and mental.

It’s just my take and some medical staff back this up, some deny it. I’ve met too many who’ve developed these conditions which can be very clearly linked to trauma.

What I can say, with all certainty, is these conditions are not all in our heads!

cornergran

Totally understand cossy. Diagnosed with CFS in my early 40’s (back then some called it yuppie flu!) fibromyalgia was soon added. I was also fortunate with an understanding employer, in my case in the voluntary sector. As time went on the least understanding employer was the NHS!

My father was totally disbelieving as I looked well, friends seemed to ignore it as do my family now with the exception of my super husband. A deliberate denial of my reality which hurts . I don’t mention it now. Osteoarthritis and a replaced knee triggered acceptance for a Blue Badge which has helped hugely, my life revolves around pacing which means I do most things, just take longer. With a base line of ten minutes on a bad day that can mean very much longer. I don't have a miserable life, there’s much to enjoy.

The looks of disbelief were hard in the beginning, now I ignore them. Grey hair seems to have helped - I’m now ‘allowed’ to walk slowly and opt out of activities when energy vanishes. Tolerance for an issue not understood seemed and seems to often be in short supply. We live in a strange old world.

We do indeed. BUT, it’s always so good to know we are alone.

Samsara1

Cossy I do understand this. I have a blue badge and a Radar key and the looks I get sometimes are very telling. You can't see that I have Lupus (now in remission but it took it's toll), scoliosis, osteoarthritis of the spine, feet, hands everywhere. What they can see is my I hope, temporary gluteal tendonitis as I limp and groan a bit.
I hope you can manage to get out and about and that having a few things like the Blue Badge and a Radar key are helpful.

Thank you.

We swapped out our car a couple of years ago to an automatic, with a “button” handbreak and it’s a medium size and great to get in and out of.

I do have a radar key, but sadly, so far, two blue badge applications turned down, due to not “being disabled enough

I do claim PIP, my assessment gave me 10 years of low level care but only 4 points for mobility and though my condition has worsened, if I do a change of circumstances to up my mobility points I risk being moved to Attendance Allowance, where there is no mobility element, rock and a hard place.

I use my PIP at the moment towards massages and cans, both of which I find of great benefit.

Totally understand cossy. Diagnosed with CFS in my early 40’s (back then some called it yuppie flu!) fibromyalgia was soon added. I was also fortunate with an understanding employer, in my case in the voluntary sector. As time went on the least understanding employer was the NHS!

My father was totally disbelieving as I looked well, friends seemed to ignore it as do my family now with the exception of my super husband. A deliberate denial of my reality which hurts . I don’t mention it now. Osteoarthritis and a replaced knee triggered acceptance for a Blue Badge which has helped hugely, my life revolves around pacing which means I do most things, just take longer. With a base line of ten minutes on a bad day that can mean very much longer. I don't have a miserable life, there’s much to enjoy.

The looks of disbelief were hard in the beginning, now I ignore them. Grey hair seems to have helped - I’m now ‘allowed’ to walk slowly and opt out of activities when energy vanishes. Tolerance for an issue not understood seemed and seems to often be in short supply. We live in a strange old world.

This poor woman had an invisable health condition.
It wasn’t really invisable it was just that the nhs didn’t go the extra mile to investigate further. It could have killed her.

mol.im/a/16148735

The above might appear bitter towards the nhs that’s because only yesterday I heard from a friend that she has thyroid cancer. She has been backwards and forwards to her Dr/ hospital for 3 years. Only now have they found the tumour 🤬

Our niece has had ME for many years and found it frustrating in the early years that nobody recognized it as an illness. I have always wondered if it is linked to trauma, in your case Cossy a traumatic birth and in our niece’s case her husband committed suicide when her sons were 7 and 4.

I have 2 heart conditions which are not visible to anyone else.
During episodes with slow and irregular heartbeats I often feel dreadful but as the many cardio medics I have seen over the years assure me my conditions won't kill me, I keep plodding on.
I have just been awarded a Blue Badge and I subsequently bought a Radar key. Not for my heart but worsening mobility issues. They have both made such a difference to me.
I have never bothered about what others think of me and I'm too old to start now!

I have type 2 diabetes and have had it for a long time now. I look ok but I am in constant pain with peripheral neuropathy in my feet and now starting in my hands. I have poor balance because of nerve damage but if you saw me sitting down, you wouldn't know

Cossy I do understand this. I have a blue badge and a Radar key and the looks I get sometimes are very telling. You can't see that I have Lupus (now in remission but it took it's toll), scoliosis, osteoarthritis of the spine, feet, hands everywhere. What they can see is my I hope, temporary gluteal tendonitis as I limp and groan a bit.
I hope you can manage to get out and about and that having a few things like the Blue Badge and a Radar key are helpful.