Getting others to understand

[KarenOR]

Outwardly you look fine, inside your body is fighting a little battle, getting someone to understand when your ill your ill your not trying to advoid work, your battling illness that floors you. so people don't get that do they. I use to go work with a cold and be over it in a few days now it takes a month or so

[emmaj]

Your right, I think people with ME in the 80's used to have the same prejudices, and now its recognised as a valid illness and people are a little more understanding of it - unfortunately APS is so little known about and understood we today have those same prejudices against us. In time it will be more widely understood and accepted and we too will have a little leniency from people and allowances made. I found I was by biggest enemy - I questioned myself on days were I was so ill and in pain yet I carried on because I felt such a fraud (and a case of having to with small children!) Its such a widespread illness that affects every part of us so even I get bored of having something different every day to deal with,let alone anyone else listening to me, then when a bug or virus goes round im more ill and for longer!. Now I just find i accept it and give in to it a little,and sod what anyone else thinks and I run round and do everything when i have a day of energy and do very little apart from the neccessities when im bad. You get bored of people saying you look fab when its just make up masking the sleep deprivation and exhaustion,and get sick of people saying 'well were all tired' or 'weve all had that cold'! I was sick the other day and it completely wiped me out, my eyes have been worse since and my whole body felt like id been battered,and now i just feel very tired and shaky. Anyway enough of me ranting - heres to more research and more advertising so once we learn to give ourselves a break then everyone else will too once its well known about out there - cheers! x

[Fairypies]

Unfortunately the misunderstanding and prejudices against ME are still well and thriving! I was misdiagnosed with ME 6 years ago and for 3 years after that I fought against people who just couldn't and wouldn't understand. It's ruined relationships even within my own family. Luckily that label has been removed now and it's a massive relief.

My current diagnosis of chronic migraine seems to elicit more compassionate responses from people bizarrely, they seem to be able to understand that better than ME, and think of it less as "lazy" - even though my symptoms- fatigue, nausea, constant pain etc etc are the same. Even doctors are more compassionate and treat me less like I'm faking it. People still make stupid comments and suggestions, as if I hadn't heard of cutting out chocolate/cheese/citrus after 6 years of 24/7 pain, or using over the counter meds to help..!

I use a wheelchair or crutches all the time when I'm out because of my balance and pain and fatigue, so I have a visible kind of symbol and that seems to make people more able to accept it.

My current explanation of my illness (I'm only diagnosed with Chronic migraine at the moment, waiting on APS..) is that I "have a neurological illness that affects my balance and pain levels, as well as my energy too". At it's simplest level it's something for people that ask, and people that I know better find out more as time goes on. In supermarkets I have a tendency to lie "I fell over my cat/down the stairs... " I shouldn't, but I have no need nor desire to explain to random nosey strangers why I'm using crutches or in a chair.

I think all invisible illnesses have the same rubbish that goes with them, because people don't or won't understand what they can't see. They don't know that people would do anything to live as "normally" as they do.

I'm sorry you're finding things so difficult. x

[MaryF Administrator]

Hi there, this written by somebody with Lupus.. is a good read, it does the rounds from time to time... and actually fits with a lot of autoimmune disorders, in fact I passed it in to a couple of therapist friends of mine who work with chronically ill people, they felt it was very good:

butyoudontlooksick.com/arti...

Mary F x

[KarenOR]

I have been called a liar by a doctor as he said I had been drinking, I have not touched drink for nearly two years so I proved him wrong, I knew I was having a stroke even though he said I was not.

I get fed up with some people wanting to do things for me just because it takes me longer to do it, and people judging my house and housework if they are that bothered they should help not judge. !!

[MaryF Administrator in reply to KarenOR]

It sounds like you have really been in the wars with this, lets hope things start to improve for you, I have had similar attitudes, luckily things did get better - mind you from my own efforts, not theirs! wishing you the best of luck. Mary F x

[KarenOR]

I think having to say to customers why I walk with a stick has got to the point I should have a board round my neck stating why I walk with a stick. I see myself as ok its just everyone who has the problem. Doctors need to learn about a illness instead of dismiss it, they need to learn to listen more.

This illness effects people in different ways, and are displayed differently, APS needs to be excepted more and seen as a disability and its a life changing illness that hampers life. The lack of thought process and memory is classed a disability in other illnesses but not APS why? Losing the use of arms and legs is a disability but not for APS, Why? Feeling floored everyday is annoying. Rant over

[Hidden]

Thank you all. I feel less alone.

[KarenOR in reply to Hidden]

We are all sailing in the same boat a rather rocky one sometimes but know someone will always hang on to you

[craftysue]

I'm with you all! However, to add to the woes-how many friends/family have said I know so and so has that and they are managing to hold a job, don't sleep likeu and manage to walk unaided. A tad fed up with some remarks for example-his GP told him to excercise through the pain by walking, she is not tired etc etc. I do have brilliant days and that's when I do housework and I really do not choose the days when I cannot lift my head from my pillow or walk without a stick or in a straight line.

How can you explain this to a son-in-law who believes all of the above-APS can be beaten, as he sits next to a healthy guy who has APS! Arrrgggghhhh!!!

[GinaD]

"Some day, over the rainbow" -- docs will nail down the exact biochemical pathways the antibodies can effect. And if we're lucky, we'll live to accept those apologies.-- "and the dreams that you dare to dream really do come true." And of course, when we know more about how those pathways are impeded then maybe, maybe someone will figure out how to fix all this.

Those of you with sticks -- have you seen the House MD episode wherein our Dr. House selects a new cane? -- loved it. I was on crutches at the time (not now -- thankfully!) and found myself thinking, "Yeah, I should get on the internet and see if I can find a fashionable as well as functional crutch. And I like House's whole flame shooting out of the crutch decor." (I sincerely hope I do not have House's personality but a part of me deep -- or maybe not so deep -- inside is pumping my fist and shouting "Yes!" every time our character turns angerly on someone and shouts "I'M IN PAIN!")

[Fairypies]

I have turquoise crutches covered in beautiful floral sticky back plastic and butterfly vinyl stickers. It gives people something else to talk to me about instead of asking why I'm on them! My chair is covered in butterflies too.

I think it's really important to remember that you actually don't owe people an explanation as to why you use a mobility aid. I would never ask someone unless I knew them well, and it would be in a different way than the very blunt "why are you on crutches?" as if it's their entitlement to know!

Karen, a disability is classed as "a physical or mental impairment that has a substantial and long term effect on your ability to do normal day to day activities", it's not the illness or disease that's classed as a disability, it's the effect it has on you. You don't need people to understand to validate that, it's your reality.

It is immensely difficult to live with something that is misunderstood or just not understood. Maybe think about printing some information from the foundation site into a small info-like sheet for the people closer to you, for their understanding, and people you know less well that ask. It'll save you repeating yourself over and over and wasting your energy.

[KarenOR]

I just say its a long term illness now, it normally shuts people up.

There is days that I have a bear with a sore head mood, I hold down a job that I enjoy and come home to a child with ADHD with added hormones. Everyone is allowed a bear with a sore head day :). Explaining to doctors who dont understand APS I give up now, instead I get up and walk out with the words not sure why.your wasting my time as im the one ill and you sweet nothing my illness. My GPs back me as they don't send me back for follow ups with hospital doctors who say I just have a headache of migraine as headache pills abd migraine medication don't help the head pain but blood thinners help ease the pain. One doctor in hospital said I had just a migraine and when I said I have APS he said no I don't, I asked him to describe APS he stood there in front of me and my family and couldn't do so.

The doctor I see now is fab the downside he retires next month. He has rechecked all my MRIs he could see the stroke damage, he does not like Leicester Royal Infirmary where I have been poorly treated.

[Fairypies]

Of course you're allowed a bear with a sore head day, sometimes it helps you feel that much better the next day.

Doctors always need to think they know everything, they hate to admit that they don't. They'd much rather make us feel like idiots/fakers/malingerers without realising the impact that that has. Each bad doctors appt makes me more nervous about the next...

I hope you can find a new Dr, you could ask him for a recommendation? If he likes them and respects them then maybe you'd find them good too.

[MaryF Administrator in reply to Fairypies]

Yes your final point here is a good idea! Good advice all around, many of us on here have had a dire time .. but things can only get better, we hope. Our UK database is nearly finished. Mary F x

[Leigha]

You can see that you're not alone here and also you've got a lot of support in this community. I can sure relate to what you say about the doctor calling you a liar about the stroke issue. I drove myself to emergency when a stroke was starting (couldn't think clearly enough to dial for ambulance) and the nurses accused me of being drunk. I haven't had a drink in years! I was given substandard care, even though I was having a stroke. Could have sued.... long story. So, I understand. Things are changing, slowly. Stay here, and stay with friends and family who do understand and accept you.

Along with the excellent Spoon Theory which Mary suggested, here are a couple of sites which might help:

thedailyheadache.com/2008/0...

restministries.org/articles...

restministries.com/2012/11/...

Leigha

[swx3]

Well I have just read the spoon theory....spot on!! ....fantastic way of explaining the life of anyone who suffers a debilitating ailment!. I loved that your comment generated a big response, and that everyone has a similar story to the next, I have days where I have just wanted to give in, I still hold down a job, and the effort that it takes to get in, and get on with it is a big struggle, when no one around you understands..or even wants to understand!

[Everdean]

I have the symptoms you have all mentioned. Pain all over and headaches and many more, including the rash. The blood tests came back normal. So obviously my Dr does not think I have it and does not want to take it much further.

Reading all your blogs makes me wonder whether it's worth trying to convince the Dr because even though you have been diagnosed you all seem to be suffering just the same even WITH the medication. I sometimes feel I haven't the energy to persue it anymore.

I have started taking a quarter of an aspirin every day, just in case.

[Everdean]

Thank you so much for your reply. I will try what you suggest and see what happens. Thanks again