To think people sometimes don't understand chronic pain (physical AND mental)

[MakeThemEatCake]

Not really sure if this is the best place to start this thread, but just feel I want to.

I understand that my issues are probably nothing compared to what some people go through - but I have a few health issues and I think people either think I'm making them up, exaggerating, or just need to 'man up'.

I have something bizarre going on with my belly button, it keeps getting infected over and over again. In the last 3 years, 5 courses of antibiotics have failed to get rid of it, plus antibiotic and anti fungal cream. Above my navel its all swollen, I had a scan and was told I have an abscess first then an umbilical hernia but thats not what the lump is - she said maybe a lipoma(?). I now have to see a surgeon soon to arrange an investigatory op.
All through the night I have pain where this lump is and around it, I can't run too well, can't do much exercise and as it's constantly infected it's so sore in my belly button and is 'icky' which makes me self conscious :(

I also get very very bad migraines, a couple a week usually. I also have carpal tunnel syndrome in both hands and suffer numbness and pain. I had an op on one of the hands a few years ago but its coming back gradually.

I suffer from anxiety and depression too and am regularly 'in pain' there even if others can't see it.

People are sick of me, my mum is fed up of me 'always having something wrong' with me, others when I say my hernia is playing up or have a migraine say 'Oh that again' and I can tell they think I'm exaggerating.

I think if it's a short term illness or accident people are more understanding but when things are chronic and long lasting, I've found people get impatient and I do feel a burden because my problems have been going on for bloody ages.

What I think I'm getting at is, am I being unreasonable to get annoyed that people don't understand I'm often in pain and I'm not making it up, or trying to get attention and that they should be a bit kinder!!!?

Sorry this is so long!

[Maudofallhopefulness]

Of course yanbu!

I hear similar stories from my SIL who has Fibromyalgia. It isn't fair and they should be kinder.

I hope the operation helps.

[MakeThemEatCake]

Thank you!

Sorry to hear about your SIL, fibromyalgia is not nice at all :(

[howtorebuild]

I had that too. Seems it's trendy to say real invisible conditions are all in the head when you are outside that person's body. Thankfully I got to the right Dr and had the right tests so that stopped that nonsense. Nobody wants to apologise though and they are embarrassed once they realise how cruel they were before dx. Like abusers they want it brushed under the rug.

The thing is even if it is all in the head, where is the empathy for someone so mentally ill they look for attention that way?

[Lottapianos]

I suffer from depression and anxiety so my pain is emotional but I completely agree with you. Most people can't handle pain or grief or sadness or anger or anything remotely difficult emotionally. They either want to believe that you're making it up or they just ignore it. Feeling like no-one understands just adds to the pain!

I think its a case of finding the gems - the people who can see beyond the end of their own noses and actually have some empathy. And they're not always where you expect to find them - friends and family can really let you down when you need them most. I have had great support from my line manager, and from a couple of colleagues who I wasn't that close to before, but I decided to confide in them and they have been brilliant. I found that a few people who make a great show of being caring types actually couldn't be arsed when it came to genuinely listening and sympathising so I avoid discussing anything personal with them now.

I hope that things get better for you soon x

[googoodolly]

YANBU at all. I'm unlucky enough to have three back conditions at the age of 26. I'm on a concoction of painkillers and it's only going to get worse as I get older. It frustrates the hell out of me when people "oh, you're young, it can't be that bad!" or "if it was that bad, you wouldn't be at work". Firstly, illnesses don't discriminate - anyone of any age can get sick, and secondly, I can't afford not to work! It's not like my bills and rent will go away if I don't go to work

I have depression and anxiety too. They're mostly under control now after a course of anti-depressants and therapy, but people LOVE to belittle it by saying things like "oh, you just get a bit sad sometimes". Fuck OFF.

for everyone suffering from anything chronic - mental or physical.

[Gingermakesmesick]

YANBU.

They want to solve it. They can't understand sometimes it can only be managed, not cured.

[howtorebuild]

Yes, it's like a musket thread, they demand an ending or solution and don't like it where there is none.

[Underbeneathsies]

I think we need to go easy on everyone.
From my own perspective, I've had ME, and recovered, but lost contact with most of my friends in the process. They couldn't keep up with my hectic (so not) life on the sofa

Made new friends and reconnected with old ones, when I was better.
Now one of them is very poorly with back pain. I try and keep in touch, and get to see her, but am impatient for her to be well enough again to join in, as I don't have much time to trek out to see her (hours journey by public transport)

I think "fixers" are the worst though, suggesting all kinds of quackery!

Imvho, Most people like neat and tidy solutions- leaving something undone and broken is seen as a pesky nuisance, and best ignored until it somehow magically gets better on its own.

Not many people have the energy themselves to listen. It's distressing to hear how someone you love is in constant pain and nothing is to be done about it, or it seems to go on and on with no resolution. It's stressful to hear that. A lot of poeple are also in pain themselves and soldering on without anyone to listen to them, so have no extra head space.

Sometimes a professional listener is in order, like a counsellor or psychotherapist, and leave your friends and family for the fun stuff. Maybe consider it an investment in your friendships to off load to a professional listener? It made all the difference to me in my recovery from ME.

I think everyone's doing their best, actually, and wish everyone the best of health.

[Queeltie]

I agree that lots of people are living with ongoing health issues. Carpal tunnel syndrome, migraines, abdominal pain, plantar fascitis, back pain, arthritis, are all very very common illnesses. Many of us are just trying to get through and don't have much energy left over to help others who also have ongoing issues.
Depression and anxiety are also very common. As well as a host of more serious illnesses. I actually know less people who are healthy, than those who have ongoing health issues.

[MakeThemEatCake]

Lottapianos and googoodolly, sorry to read that you're also coping with illnesses. I hope you are doing ok, or as best as you can from day to day x

I agree with other posters, I think people like endings. We see it on here, when a person is stuck in a situation and asks for advice we like a resolution, an update. I include myself in this btw. I think it might be similar in rl when someone is going through something long term, its hard to know how to deal with it just continuing for weeks, months...years.

I just wish people were a bit more accepting. I've had so many eye rolls, tuts, even had a friend take the piss about my hernia (not in a nice way), had my DM tell me I'm too young to be like this, that I'm like an 'irritating old woman' - it hurts to hear that!

[howtorebuild]

Op, walk away from them. You don't have to take that behaviour. Your friend you will likely lose, no great loss there. Your Mum, it may take years and she will likely adapt to your new boundaries if she wants a relationship.

[MakeThemEatCake]

Underbeneath, sorry to hear about your ME. I do here what you're saying, not everyone can listen to people's problems, health or otherwise. I am guilty of all this myself! Going through health issues has really made me look at myself and understand people that I didn't before, and I know now that so many illnesses and disablities are subtle and hidden. I'm seeing a counsellor, it does help very much and am grateful for that time each week.


Queeltie - I know what you mean! I do know a fair few people who have health problems, it seems to me that anxiety is becoming more common, OR is becoming less of a stigma now. I know of so many people with anxiety now. To be honest, the people I find unsympathetic are ones that I know don't suffer from any health problems, I'm sure that having them yourself does make you more understanding. (IME anyway.)

[MakeThemEatCake]

I do need to learn to walk away, that friend is mean to me about lots of things, we're growing apart to be honest so I've not said anything.
Not sure my mum will ever change

[kali110]

Yanbu.
I have fibromyalgia, headaches, migraines, anxiety, depression, spinal damage, knee and neck problems and chests problems.
Iv had them since i were 16 now im in my early 30s.
When i were at work i was the hypochondriac as i always felt bad.
People on public transport talk about me as i can't get out of the seat for elderly, disabled or pregnant women. I'm called rude and selfish.
I look a lot younger than my years.
I'm one of those people mn hate as if i rarely leave the house and am in a cafe i sit at a seat whilst my friend or partner cues. If were in there it means i need to sit for a while!
I hate it. I hate the fact that i had to give up a job id done for years, that some days i can't get out of bed and some days i get stuck on the loo as i can't get up.
I'm lucky i have a lovely dp but i really wouldn't be surprised if he had enough and packed his bags one day.
This wasnt how i thought my life would be. My ocd has got out of control because it's the only bloody thing i can control.
I gave up trying to even apply for pip as apparently enough or not disabled enough.
I would not wish this on anyone.

[Queeltie]

Yes you only seem to get PIP if you need carers to help you a lot every day. A lot of the people who got DLA, will not get PIP.

[kali110]

Googoo oh yes you can't possibly have anything wrong with you when youre young!
I loved hearing that one my 21st
Because i just feel like taking all these tablets and painkillers lol

[kali110]

The woman who did my pip was awful! She asked me if i was sure i had depression at 17 and was i actually diagnosed with it!!
Erm, no the doctor just put me on medication for fun!
Then wrote things down i never even said!

[Lottapianos]

Ah yes, its great being given a list of all the reasons why you couldn't possibly be ill / in pain / depressed / anxious. So helpful

[googoodolly]

Kali101 "Because i just feel like taking all these tablets and painkillers lol"

Ugh, yes! People have said to me "oh, you take a lot of drugs, that can't be good for you!" - well, y'know, it's either that or not be able to move without getting shooting pains in my back, hips and legs - somehow I know what I'd rather choose!

[MakeThemEatCake]

Oh yes then there's the whole benefits situation. I'm on ESA but about to start an assessment for Dyspraxia and Aspergers so was going to apply for DLA but I know the change to PIP is imminent thought I'm not sure when even though I've tried to research online.

Kali I am so sorry for what you go through I understand how you feel your dp would pack up and leave but I really think most people with a heart wouldn't do this, lean on him and let him be there for you as much as possible. OCD is a bugger too, I have that as well, it really does help you to feel there is some control left. People who call you a hypchondriac or give you the looks in public are just not worth your time - be thankful that you're not ignorant and rude like them.

[MakeThemEatCake]

People have said to me "oh, you take a lot of drugs, that can't be good for you!"

This x1000!!!

[googoodolly]

I feel like I've found my spiritual home on this thread!

[MakeThemEatCake]

googoo

Do any of you ever have people telling you that you look so miserable and if only you 'cheered up a bit' then the health issues would 'ease off' - basically saying that you're talking yourself into feeling ill?

My mum is always saying I need to smile more and go for a brisk walk. I know she means well, she and others don't see the times I'm crying in pain with migraine and the nausea that comes with it, plus crippled with anxiety that this one might be a stroke.

[googoodolly]

Yep, my dad is the same. He's of the "going for a walk solves everything" school of thought. I know he's only trying to be helpful but I know my body and I know that any walk of over about a mile just HURTS.

Then I get "it's because you're not used to it!" and it's like...well, I can't get used to it because the pain from doing it once means I can't do it again for several days! And even if by some miracle I can walk two/three days in a row, the pain never gets better!

[MrsTedCrilly]

It's awful isn't it, we like to think we're an intelligent, forward moving society but there is still so much ignorance and black and white thinking.. Like there can't be people walking around looking normal but suffering inside.. Pain is invisible!

My mum has had fibromyalgia, arthritis, depression and agrophobia for 15 years and never complains but suffers greatly.. Her best friend said recently, "are you sure you can't just go out somewhere? It would really help" Like with most things, people can only understand when they're suffering themselves.