“Invisible” health conditions

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.

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

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!

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.

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 🤬

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.

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.

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.

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!

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. 😪

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 got tearful reading this. I too have M.E. Like you Cossy I was lucky, the civil service made adjustments, but eventually I got medical retirement.
The absolutely worst part is people not understanding and siblings thinking I'm a hypochondriac or just slightly mad. I rarely see anyone. They know I used to cycle, run, sail, hillclimb, why can they not believe? Their company for short visits would have helped so much.
I'm so lucky to have an understanding husband but I feel sorry for him, stuck with me.
I feel sorry for all of us who look ok or well and get no help/sympathy.
I'm afraid there is no answer to the problem.
Marydoll I too get the comment "You look well".

Oh your post resonates with me Cossy, so much so that a year ago I drew a large stick figure on a sheet of A4 and arrowed body parts and wrote the illness/condition affecting each each part.
I dread being in the care of somebody someday who hasn't a clue about the invisible illnesses I have.
For example, my head and neck - there are 5 hidden conditions.
Starting at the top...A rare form of intermittent and extremely painful headache. A chronic condition. Diagnosed several years ago. No treatment available for me, as it's contra indicated with medicines I have to take daily for other condions.. Extremely painful when it strikes.
Eyes..dry eye syndrome but paired with my dry mouth.....Sjogrens disease. No moisture in mouth or eyes.
Steroids for a nasal drip and frequent sinus pain.
Raging tinnitus in both ears.
Throat - underactive thyroid.
It gets worse. 5 more conditions working my way down to the feet. I won't move down the body any further as I'll bore you all to death and give away my identity too.

However, I am active, ( I consider myself fortunate to have my mobility) have a fairly positive can-do nature, I'm cheery by nature if I can be and rarely talk about my ailments, because, let's face it, people probably care but there's nothing much anyone can do.

I am convinced there are professional sick people out there who regale everyone constantly with their illnesses and almost enjoy playing the victim.
I don't mean to be unkind but I know several people who really have become their conditions and talk about them constantly.
We all need sympathy and understanding but you never get any if you have invisible illnesses unless you forever remind people how you suffer. I don't want to be that person, if you know what I mean?
I have two female relatives and for some time all they do is talk about their conditions when we get together. It's become attention-seeking I think - or maybe it's because we're all different and some cope better than others?
I often think " If only they knew... "
I suspect many people get used to suffering in silence. There's nothing much that can be done other than regular check ups and taking the medication.

I'm a bit of a 'c'est la vie' type I think. Life can be extremely cruel but you have to get on with it (if you possibly can) type.

With invisible conditions most people cover up how hard life can be some days - until they really can not cope any longer. My grown children have no idea how hard some days are, and how I take so much medication to get through a day, but for as long as I can, I want to do as much as I can.
I'm not a very good patient as I don't want to give in to stuff I can manage. In fact I hate being slowed down by my various conditions. I do make a very good nurse though and am happy looking after others who suffer.

Cossy my "indefinite" DLA was reassessed when I got near retirement age, turned down. Did not qualify for PIP. Oddly enough no problem getting blue badge, but very cunning move by DWP.
The looks I get using my badge! And remarks about free car. Luckily my husband can buy me a car. I couldn't go anywhere if I didn't have it.

As you say, good to know we are not alone.

I too have several invisible health conditions and like others look well.

Last year an accute significant illness(consultants words) left me looking dreadfully unwell.I noticed a big difference in people’s attitude when I actually looked ill as to when I feel dreadful but look well.

I do as much as I can when I can but when I say I’m not up to doing something I feel people just see it as an excuse.

I have two conditions that don't show themselves. In fact when I think about it, there must be hundreds of invisible health conditions.

I have spinal stenosis which makes walking painful, but asking people to slow down doesn't work, as they slow down for roughly three steps and then pick up their own pace again. I try to avoid contact with people if I think it will include walking anywhere.

I have another invisible health issue that causes fatigue and sometimes nausea and diarrhea, which means I have to be prepared, and to know where the toilet is if we go anywhere.

It's all hard, but I do realize that there are many people with far worse conditions than mine. Getting older can be difficult sometimes.

Everyone also says how well I look even when I am strugglingto get from room to room never mind anywhere outside. Fibromyalgia, neuopathy and osteoarthritis. I rely heavily on my Husband to drive me wherever I need to go but he is now reaching an age when he is considering giving up the car. Today I cheered myself up a lot and bought myself a new, bigger,and more comfy mobility scooter so I am looking forward to getting out and about on that!

I can't tell youl how much I empathise with you all.
I too have many invisibles.
Many autoimmune conditions...8 on the last count. Including Thyroid, which caused Hashimotos Encephalopathy. Lymphocytic colitis, heart problems with AF.
Years ago I was diagnosed with Fibromyalgia but it turned out to be autoimmune thyroiditis.
I think family sometimes, don't appear to want to know, but I suspect it's because they fear, in my son's cases, that we won't always be here.
Oddly being diagnosed with Coeliac Disease 2 years ago, apparently same gene as thyroid, has really knocked me for six. I find it an isolating and anti-social condition.
The strange thing is my hair hasn't turned grey, for some it's a gene that hasn't switched on, my GP tells me.
Some days I feel sooo depleted. But I don't particularly look ill although I think I look knackered at times.
Sure do have to pace myself.
It is incredible that so many are living with all these conditions.
Is this a current phenomenon or did our forebears go through all of this.

I know that there are people, younger fit looking people, who suffer a disability, my DH looks disabled but all the same when I board a bus or train or the underground and there are no seats I always ask the person in the priority seat if they are disabled and need to sit down, if they say no they generally give my husband a seat. But I never assume.
Is the same when someone parks in a disabled space. Looks can be deceiving.

Yes you are right Fallingstar, looks can be deceiving.
A few have mentioned some of these conditions may be related to trauma. I am in agreement with those opinions.
In an attempt to be candid and I can only speak re my own family:
I was the youngest of 5 children. My father had schizophrenia (untreated) despite numerous neighbours contacting the NSPCC My mother completely traumatised, eventually took her own life.
Myself and all of my siblings, 2 have passed, have all suffered with many different medical conditions.
I think I chose to follow a career in, mainly child protection, behavioural difficulties and Special educational needs because of my early years experiences.

I have had cancer and sepsis and suffer still from post sepsis syndrome. I have a stoma which causes no end of problems as I also have IBS and I suffer from low blood pressure with dizziness, so struggle to stand for too long or walk far; none of this is visible to outsiders and I too have a blue badge and garner suspicious looks from other people who assume that I am swinging the lead.
I managed to keep working after my operation for a few years, but my health gradually got worse! and I am now not able to work.sadly I am still a few years off state retirement age thanks to the constantly moving goal posts 😡

ROMILO

Everyone also says how well I look even when I am strugglingto get from room to room never mind anywhere outside. Fibromyalgia, neuopathy and osteoarthritis. I rely heavily on my Husband to drive me wherever I need to go but he is now reaching an age when he is considering giving up the car. Today I cheered myself up a lot and bought myself a new, bigger,and more comfy mobility scooter so I am looking forward to getting out and about on that!

That sounds cool!

When I can no longer drive, I intend to buy myself a mobility vehicle, and have it sprayed bright, sparkly purple, and I’ll whizz past everyone, waving and singing!

We should form a club and really really support each other and formulate clever responses to those saying;

“Well, you don’t look ill”
“You look so well”
“Really”
Or the very worst,
“Pull yourself together”