“Invisible” health conditions

I have chronic autoimmune conditions plus other things and get good days and bad days. My response to 'you don't look ill' is ' and YOU don't look stupid ' .

Feel like most of you.Have had knee replacement hip replacement neither has given me pain relief. Severe COPD breathing is a real struggle doing most jobs everyday.Have badge but look fit as a fiddle.

Hiya! There is a 'Daisy' card that you can wear that says you need more time. And I'm am struggle with fatigue from meds. I was referred to "Talking Therapies " nhs - and have found that quiet helpful in dealing with my situation. Let's hope you are feeling better soon

I have COPD and if you saw me walking around the house you wouldn't know. But watch my breathing deteriorate walking up stairs, steps or a hill. Or lifting anything remotely heavy like a vacuum, a bin, a mattress corner to tuck the sheets under, a carrier of shopping etc. I can't get a blue badge because I can walk on level ground for a while before stopping for breaths

Floradora9 I looked up the hdsunflower.com and was a bit worried that just anyone seems to be able to order the bands and lanyards . It seems strange that this could be used by people who have no need for one.

Yes, I was surprised about that, too. I expect it’s bound to be abused and then it’ll be withdrawn or people will either have to provide evidence from their GP.

Wrong thread, it was supposed to be the gardening thread, sorry GN's.

https://signal-corridor.live/uploads/talk/202609/medium-4wevf1-img-2795.jpeg%3C/span%3E https://signal-corridor.live/uploads/talk/202609/medium-3pr23h-img-2774.jpeg%3C/span%3E

View of rest of garden, (In the foreground there are pots, a strip of planting, and a patio)

Squiffy

I was diagnosed with ME almost thirty years ago by an enlightened neurologist, who didn’t fob me off with the usual diagnosis, of the time, of it being a psychological issue.

I was bedridden for a few weeks and for years I did look ill, as I lost a lot of weight and would regularly go ashen grey with really dark grey under my eyes, plus I had a tendency to just collapse.

As I improved, I did wonder if the ‘you look well’ comments were a barb or meant to make me feel better! I think mostly the latter…

I still struggle, having had a relapse recently, but I’m very good at hiding it, I try to be as normal as possible. Of course, the aftermath of that is PEF, or occasionally I hit the deck, but my nature is not to give in and often I overstretch my limit.

Someone on a previous thread mentioned Sunflower lanyards, pins and wristbands, which enable you to have assistance, e.g at airports etc. Mr Squiffy recently applied and was overwhelmed by the help that he received! I’m thinking of applying myself.

Here’s a link:

hdsunflower.com/uk/accessories-pack-1.html

I looked up the hdsunflower.com and was a bit worried that just anyone seems to be able to order the bands and lanyards . It seems strange that this could be used by people who have no need for one.

I retired end of April last year due to pain from scoliosis and osteoarthritis.

Recently diagnosed with prolapsed womb (waiting list for hysterectomy is 4 years unless I pay privately)

Last week found out I have haemochromotosis

Just waiting to see what is next?
😕

I was diagnosed with ME almost thirty years ago by an enlightened neurologist, who didn’t fob me off with the usual diagnosis, of the time, of it being a psychological issue.

I was bedridden for a few weeks and for years I did look ill, as I lost a lot of weight and would regularly go ashen grey with really dark grey under my eyes, plus I had a tendency to just collapse.

As I improved, I did wonder if the ‘you look well’ comments were a barb or meant to make me feel better! I think mostly the latter…

I still struggle, having had a relapse recently, but I’m very good at hiding it, I try to be as normal as possible. Of course, the aftermath of that is PEF, or occasionally I hit the deck, but my nature is not to give in and often I overstretch my limit.

Someone on a previous thread mentioned Sunflower lanyards, pins and wristbands, which enable you to have assistance, e.g at airports etc. Mr Squiffy recently applied and was overwhelmed by the help that he received! I’m thinking of applying myself.

Here’s a link:

hdsunflower.com/uk/accessories-pack-1.html

I don't have a badge...but when I do I think my response to "Well, you don't look ill" might be, "Well, you do, do you want to borrow my badge" 😉

👍 catch me if you can 😄

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”

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!

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 😡

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 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.

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.

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 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.

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.

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

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.

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.

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".