“Invisible” health conditions

Yesterday I was diagnosed with FND ... Functional Neurological Disorder ... basically faulty neurological software whilst the wiring is still intact. It has arisen as a response to gradual accumulation of physical problems (painful hip replacement, spinal surgery) that have altered my gait through pain and caused failure of messages to my legs ... my balance is useless, my legs are like lead with tingling and numbness. And 2 days ago I had a terrifying episode where I could not walk ... it was as if my feet had been screwed to the floor.
Also a factor is the repercussions of life traumas ... dealing with a paranoid OH and his care and death, and frightening heart episodes.
Add in heart attack with stent and being reliant on a pacemaker. And short of breath and permanently fatigued..

What do others see? A slim woman with long dark brown hair and no grey. A woman who runs a choir and plays many roles in the community. Yes they see the walking stick but otherwise a normal person getting on with their life.

But that is not the reality. They do not know that in order to do these things I have to rest for hours first; I have to steel myself to keep going through pain, overcome the fear of falling when my legs decide to pack up working, deal with breathlessness ... and I cannot safely go out and enjoy myself with days out, holidays etc. But there I am running a choir rehearsal and looking just fine.

The pretence us extraordinarily hard work .....

It is invisible, and I try to keep it that way .. I cannot be a boring pain in the neck, constantly moaning about my ailments.

I am hearing impaired to the point of it being considered a disability. People can’t see it and I have lost count of the times I have felt obliged to apologise for not hearing someone coming up behind me or to the side of me. I have fairly powerful hearing aids but they are just that aids. People without hearing issues think they magically restore normal hearing. They are a tremendous help and I could not manage without them but the number of people who accuse me of not listening because I have not heard them or having no understanding that things that work for people with normal hearing do not work for me. Subtitles are not an optional extra and hearing fatigue is all too real. The strain of listening all day long is exhausting. Hearing people have no idea.

I am also a functioning depressive. It is something I try to hide it because even though I know it is nothing to be ashamed of and, goodness knows, we hear enough about “mental health” these days, l feel ashamed that I cannot fully get over it. I try to put on a public persona of a happy person. Despite all this, I am an optimist by nature. I try to be as outgoing and interested in others as possible because I am a people person. I think most people see me as an extrovert but, in reality, I am an introvert and need a lot of time to myself in order to recharge my energy and batteries.

I have kidney failure, amongst several other boring things but I had no idea until a couple of blood tests showed it up. I ignore it, never talk about it. Life’s too short as it is. Most of my friends and contemporaries have ‘hidden’ ailments but we have a sort of pact between us to never talk more than 5 minutes about it. It works, we have happy memorable times together.

Marydoll

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. 😪

She stomped away, turned back and said, Well you don't look ill to me.

To which the reply is, "how I look to you is irrelevant as you clearly don't understand Medicine which, if you did, would prompt you to keep your mouth shut opinion to yourself.

... that must have been infuriating Marydoll.

Some people are so ready to shoot their mouth off - it's rude and unnecessary - and they need to be reminded of that.

Cossy what a wonderful and honest post, this truly moved me. I think in the past women were thought of hypochondriacs and were made to feel that we should put up and shut up. Well no longer, GP’s and Consultants have got to listen to women in order to make timely diagnosis of the many problems women experience.
Diverticular disease, IBS, osteoarthritis just name a few make me feel washed out on occasions, but these pale in significance compared to yours. I worked with someone who SUFFERS (being the operative word) from ME and I witnessed what a debilitating affect this illness had upon her and in-fact her whole quality of life. She often said it’s so hurtful when I talk about this, I can see in people’s eyes they think I’m making this out to be worse than it is.
People don’t always realise with ME the intense fatigue and exhaustion experienced with the least exertion.
It would be great if ladies like us could have a meet up and a good chat about these things. I don’t suppose anyone with like minds lives in Lincolnshire where I am fancies a meet up?
To all the wonderful ladies here with all your different health problems, I do sincerely wish you well and the strength to cope with your given ailments. Finally when friends say to me you are looking so well, and I know that’s not the case I do ask when they last had an eye test.

I once got into a conversation with a passenger on a plane who learning that I had booked special assistance for osteoarthritis informed me "My wife has that but she wouldn't like to make a fuss." He then got chapter and verse from me on the Equality Act and probably wished he hadn't opened his mouth.

I actually enjoyed all the dirty looks I got when I jumped the queues.

friendlygingercat

I once got into a conversation with a passenger on a plane who learning that I had booked special assistance for osteoarthritis informed me "My wife has that but she wouldn't like to make a fuss." He then got chapter and verse from me on the Equality Act and probably wished he hadn't opened his mouth.

I actually enjoyed all the dirty looks I got when I jumped the queues.

"My wife has that but she wouldn't like to make a fuss."

It's quite possible she would like to "make a fuss" or - more precisely - request assistance, but was afraid of his reaction if she did.

I’m another with a number of auto immune conditions. I was diagnosed at 43 when the rheumatologist professor told me I’d been managing well since age 25. Bet you felt like a hypochondriac he said, you had the genetic base, all it took was glandular fever at 25 to wreck your immune system and a series of auto immune conditions started. You’ve been doing well, a positive attitude helps - as does treatment for RA which we will start.
This year has been grim. I agree with others that trauma plays a significant role in the diseases and in flare ups. I’ve been in a flair of Sjögren’s syndrome since three infections in February. Initially my gp thought chronic fatigue but as existing sjogrens symptoms expanded to include exhaustion, dry mouth, ulcers etc the flare was diagnosed. No current treatment so it’s rest, good diet, meditation and (trying) staying positive
Thanks Cossy for this thread that confirms we aren’t alone

Iam64

I’m another with a number of auto immune conditions. I was diagnosed at 43 when the rheumatologist professor told me I’d been managing well since age 25. Bet you felt like a hypochondriac he said, you had the genetic base, all it took was glandular fever at 25 to wreck your immune system and a series of auto immune conditions started. You’ve been doing well, a positive attitude helps - as does treatment for RA which we will start.
This year has been grim. I agree with others that trauma plays a significant role in the diseases and in flare ups. I’ve been in a flair of Sjögren’s syndrome since three infections in February. Initially my gp thought chronic fatigue but as existing sjogrens symptoms expanded to include exhaustion, dry mouth, ulcers etc the flare was diagnosed. No current treatment so it’s rest, good diet, meditation and (trying) staying positive
Thanks Cossy for this thread that confirms we aren’t alone

Iam64, we could be twins. ♥️ Your post resonates with me,

I have had a dreadful twelve months and am becoming angry at the unfairness of it all.

I had to go back on Hydroxychloroquine, to try and dampen down the Sjogren's and possibly will have to change biologics (again!)
I am constantly hoarse and going to the dentist is traumatic, because I have difficulty swallowing, due to Sjogren's.

I hope things improve for you. x

Another here with several invisible health problems apart from an obvious strange gait when walking, some days more obvious than others. I don’t look ill and I am a ‘busy’ person. Quite a struggle some days but won’t let it beat me until I have no choice.
Whilst I wouldn’t wish pain on anyone , I do sometimes think it would do some people good to walk in other people’s shoes for a day.

I identify with "I won't let it beat me."
Sometimes my DDs suggest I should give something a miss and rest and that is my response.

None of us know how long we have left and it is frustrating to waste any of it, so on we bash ...

My children are always telling me to rest and stop doing so much.

None of us know how long we have left and it is frustrating to waste any of it, so on we bash ... Exactly Luckygirl.

I'm going to come out of the closet and say that I have had at times very severe mental health problems since 2002/3 and been in the care of the relevant people. I get PIP low rate. I am what is best described as bi-polar 2 (mood swinging disorder)

Which is very different from bi-polar1, where people when manic get can get psychotic: I have had so much help and treatment over the years it is a lot more settled now, but basically there has been periods of suicidal depression including one serious attempt early on which alternated with heightened moods where one tends to do too much and be in laywoman's terms "a bit hyper".

Years of therapy have paid off inasmuch as I self watch and ameliorate both ends of the spectrum, but there is always a risk when there is a big emotional trigger.

You can imagine what a trigger being sexually assulted in the safest of places did to me last autumn when although the police believed me many around did not:

and it has been a triumph for me to get through that without it triggering a low, tho it left me with chronic fatigue (not ME thank goodness) and is life limiting but not ME wise.

And of course it is completely invisible since I always take care to be at least minimally presentable in bad times or just never go out and so on. but in good times - and there have been more since good treatment and maybe just getting older and wiser 🙂 - well no one could possibly know, but it is only just really possible to talk to many people about it without assumptions being made.

I do talk about it with others of course when it feels safe. I find one spots them and are able to share without going on about it.

And reading many people above I see its the same - people putting you down because it doesn't "look" like you are suffering the physical or mental pain that you do (for one rarely gets one totally without the other).

I know our O/P cossy understands these matters all too well.

Lots of brave people upthread making the best of matters, and I believe it's good to speak up so that people in general are under and more accepting. (tho I know I can get strong in N and P)

Like others above, these hidden disabilities have both sad sides and plus sides. the sad side was crashing and giving up a promising career as an artist: I was showing internationally but just stopped and not done a lot since then just modest amounts, and I could not hold down a job, too vulnerable to the slings and arrows of the "knife in the back" side of many jobs: my first marriage ended becuase of it, tho we ar enow good friends and share our DS and DGC. It has taken a long time for Ds and DiL to really understand an accept, but they do now, and so on.

What is the plus side you ask? Well, it has made me a better listener I think, and of course, given the rate of MH difficulties in the population, if I disclose aspects of my condition, it gives others a chance with a sigh of relief from them "me too".

Mary doll, we have compared things in the past but I don’t suppose either of us knew the other also has Sjogrens.
I was off biological February till June, to give my immune system time to recover after three infections. Inevitably, inflammation went potty. On reflection the sjogrens flare was triggered by infection and a family trauma. I’m away this week, GP again next week and she’s expecting to refer to rheumatology and push neurology for an earlier appointment.
I wish the impact of auto immune conditions had more publicity and fund raising.
Carry on Marydoll and others x

This is interesting on the issue of living with illness: www.facebook.com/reel/734832109071689

Cossy

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.

I thought of you had PIP (regardless of level), you invariably were entitled to a blue badge. Keep trying Cossy

Musicgirl

I am hearing impaired to the point of it being considered a disability. People can’t see it and I have lost count of the times I have felt obliged to apologise for not hearing someone coming up behind me or to the side of me. I have fairly powerful hearing aids but they are just that aids. People without hearing issues think they magically restore normal hearing. They are a tremendous help and I could not manage without them but the number of people who accuse me of not listening because I have not heard them or having no understanding that things that work for people with normal hearing do not work for me. Subtitles are not an optional extra and hearing fatigue is all too real. The strain of listening all day long is exhausting. Hearing people have no idea.

I am also a functioning depressive. It is something I try to hide it because even though I know it is nothing to be ashamed of and, goodness knows, we hear enough about “mental health” these days, l feel ashamed that I cannot fully get over it. I try to put on a public persona of a happy person. Despite all this, I am an optimist by nature. I try to be as outgoing and interested in others as possible because I am a people person. I think most people see me as an extrovert but, in reality, I am an introvert and need a lot of time to myself in order to recharge my energy and batteries.

I understand. I wear hearing aids in both ears and the other day I had to explain to my grandson that I didn't hear him when he said something to me. He thought I had ignored or was cross with him. I showed him my two hearing aids and he understood. I mostly need to have the subtitles on especially when watching American programmes.

I have survived three breast cancer surgeries, one resulting in a mastectomy, then years later the silicone implant had to be removed because it was leaking. Resulted in only 95% being removed as to remove the remaining 5% would have left a whole in my chest.

I have had two total knee replacement surgeries due to osteoarthritis and last year had a total hysterectomy, where pre cancerous cells were found on my cervix and uterus. I guess I was just lucky because I can tell when something is not right with my body. The surgeon thought I did the right thing asking for a hysterectomy because of the niggling pains i was experiencing in my tummy.

On top of it all, I have had two cataract surgeries. And now suffering from backache if I walk a short distance. MRI shows twisted spine to the right because of not being allowed to carry on my left mastectomy side. Some discs are herniated. Seeing the physio on Monday.

I do have a blue bad but despite all that I look very able bodied and feel guilty when I grunt and struggle to get out of my car in the disabled bay. Onlookers don't understand how some disabled people suffer in silence.

I would get a blue badge if I asked, as I can't use public transport and find going to unfamiliar places alone very difficult for over 20 years now, its a matter of doing it so I can go to someplace in town I really want to go to like our Quaker Central meeting and all the things that happen there.

I report people at the gym who use it falsely. My DGD at 12 is vv severely disabled in multiple ways so of course they have one and it helps a lot. Makes me cross with lazy people at the supermarket too tho car parks are OK for me.

Wylow3 I see every week many able bodied people using the disabled parking. They don't display a blue badge so not hidden disability. Sometimes during busy times, I have to drive around until I can find parking near the entrance.

My blue badge is a godsend .... it means I can park near enough to places and not be flaked out or fall over through poor balance by the time I get there!
It also makes my family very enthusiastic to take me to events as they know they will be able to park nearby!

Luckygirl you are a valued Rellie 🙂 Yes my family find the same, they have 4 kids and a social large vehicle so it's needful.

Special large not social large. tho its gets pretty sociable when 7 are in there if a gran or grandad is with.

Nurseundercover it was so good to read what you said about M.E. I feel guilty sometimes when I know people with very serious illnesses and think but they can do more than me. My M.E. is so limiting. I see no one most of the time except my husband. People don't understand total lack of energy and brain fog. Even doing a crossword together I often feel faint with the effort after maybe ten minutes and have to lie down. When I can I do short walks, as I know its important. The only pastime I can manage regularly is jigsaws. Its such a boring isolating existence.
I wish more people understood.
(Sorry, just having a moan.)