getting people to believe you are sick

Hi Amy, this is Nancy. I am constantly trying to make people realize that those who suffer CIDP do not “look sick” but, unfortunately, they actually are! If I limp or use a cane then people realize I have a “problem”; if I decide to go on my own and put my best effort in walking or whatever I need to do, well then, there goes the stupid comments such as “oh, you look healthy to me”… etc. etc.
Then there is the medical issue…sometimes doctors do not focus on what the patient is trying to communicate to him, they just think that we exagerate or worry too much about something “stupid”. My suggestion: be direct and make your point without pulling back unless they do all they can to diagnose what is causing you pain.

I was getting my IVIG on Tuesday. Due to many “air” alarms it took longer than usual.

My nurse had to go off shift so I was left in the hands of another ward.

I get my infusions in the oncology ward which is kept apart from the rest of the hospital to try to avoid lots of people coming in cause most cancer patients that are getting chemo have a low imune system.

Anyhow the nurse that came to look after me said she usually felt guilty coming into this ward after being on the floor with the other sick people
when cancer patients are in the room BUT she felt OK coming into look after me cause I was so healthy!!!!!

As you can imagine I was not happy about this comment and asked her if I was so healthy why did she think I was getting IVIG in this ward!
She had never heard of CIDP and has no idea how sick I really am.

I tried not to make her feel real bad but tried to get her to understand just cause someone looks healthy doesn’t mean a thing. You should have seen her face when I asked for help to get up to use the washroom and needed assistance walking cause I was in so much pain.

Hopefully she will take this experience and learn and grow from it and she can pass on her new knowledge about CIDP with fellow nurses.

Rhonda from Canada

Amy,

The most important people in the Doctor patient relationship are the Doctor and the patient.

Everyone else can get over it.

I am very sympathetic towards others and their problems. I always presume that others will be the same with me. But, I live in my own skin and I understand what is happening to me. If someone truly cares they will be understanding. If they do not truly care, I don’t have enough time in my life to convince them.

Focus your energies on yourself and healing. Anyone else can get over it, or talk about someone else.

Dick S

I had the same problem and if you look not to far back on the thread ” how do I talk to my family about being sick?” you will find more good advice on that topic.

finally what I did was sit my husband down and said you need to understand that I am sick. and then reiderated no you really need to get it because i dont think you do. He seemed to understand. CIDP seemed so mysterious I think. there is no frame of reference in the general pops mind to associate this disease with. I mean they have never seen anyone suffer from it. Now that they are looking at lupus with me, my husband seems more non shalont. he says I have heard of alot of people with lupus and they seem fine. everyone seems to be saying that. tHey havent done the research and seen the prognosis for that disease though.
just telll people you have something like MS only it effects the peripheral nerves. that might get some respect.

Try to understand, that so few folks ever EXPERIENCE what all we go thru from the beginning to the now! I’ve a family relative w/MS who ‘didn’t get it’ until I dug deeper and cited that dreaded ‘demeyelination’ word! W/MS it occurs in the BRAIN end path, with US it starts at the extemeties. THEN we did not have to share pain stories!
I USED to get IG infusions in a cancer infusion center, and I only got any ‘OH DEARS!] when I’d informed them that I had cancer as well. I’d been going there for over 3 years and not one person had a CLUE about CIDP? Yet, those with MMN were truly sympathized with and catered to. I really felt cheated by their care there.
I no longer go there as I’m now getting treatments at home. I must say that time-wise and safety-wise I’m better off with home treatments as I: a- don’t have to drive while I’m still under a multi-tylenol/benedryl dose’s and b-I truly believe that IF, I should get any infusion reactions? I can get to the hospital ER and get needed treatments faster than if I were in the hospital itself. Scary but true thought. Treatments at home take less time as well, as I, and ONLY I am closely monitored for reactions [tho none have occurred] and I’ve not had to wait four hours for a hospital pharmacy to MIX my IG for my X-o’clock appt! Far, far less stress and wear and tear on ME!
As for your hospital? Find out the name of your brand’s IVIG and call the IG company and ‘hint’ that the infusion center where you get treatments ‘isn’t quite as aware about IVIG and what it’s for….’ I’ll bet that center gets closed for a one-2 day ‘education/training’ session! It is in everyone’s best interests to be as educated as they can about what all is being done to them, and that those who are in the ‘doing’? Know well as well! Good things soon!

Amy,

It’s only natural to receive or give glances when something or someone is different.
It’s not worth your time, effort or stress to make them understand how sick you are.
If they care they will understand how sick you are.
You can’t make someone understand what they don’t want to know.
As Dick says, Doctor and patient relationship.

We care 🙂
Shirley

Looks like I am the “lucky” one. No one ever comments how healthy I look because I am in a power wheel chair. It’s ironic actually, isn’t it?

Norb,
Pretty ironic, I guess your power chair speaks for its self.
I had a little girl get excited when she saw me in the wheel chair.
“Mommy look that lady has wheels, I want some wheels like that.”
Hope she never has to get wheels.
Keep enjoying your road trip.
Shirley

Thisweek, wen I wast my last Hopkins Appt, I picked up the MS Society w the above Title- Jumped right out at me!!!

Amy, I’m 6’3″ weigh 215#’s, have a full head of hair (at 47) band can still walk (not fast, or well, but I can;-)

I am in constant fear of someone acusing meof “trying to beat the ystem” but, God’s Honest Truth, I coud lift hundreds of pounds, once, noI cannot lift my 53# daughter?

I’m not sure my Dr even “gets it”, (And he’s KNOWN for CIDP Treatment?!) But, botom Line; Yo do wat you can, you inform peopl you think might spread awareness, and youtake it a Day at a Time. I often joke saying “That’s what happened, I tried taking it 3 days t a time, and, now, I’m all out of sync”.

Comngup w analogis has helped me; It’s like a frayed extention cord in a mud puddle, won’t carry a charge, or, It’s like running your Toaster Oven on a 100′ Ext Cord, blows th breaker, or “My Dr told me to throw away the Christmas Tree, the lights are worn out. People get the picture, o rthey’re not worth it!

But, on that thread- What if your DOCTOR keps tellng you- “You are doing great! You’ll get back, give it time, You’re Strong!” Yet the circles seem to be tightening- what do U do then?

Anyway, Amy, hang in there! One stumble, at a time!

Eric

“Push the Envelope”

But, just slightly, each time,

When the “tingling worsens” back off?

Maybe take notes (I can no longer read my handwriting)

But, that way you are strengthenng, rathr thn weakening, yourself

It’sa Balance, between working/stretching te muscles

and stessing th nerves?

Just My Thoughts

God Bless!
Write me, if you like

Eric

I’m a longtime forum member, but I have not posted in a while, but I found this topic interesting and wished to share my view as it has now evolved. I’m a 47 year-old male and was once quite athletic and strong. I was dx’d with multifocal CIDP (Lewis Sumner Variant) in 2004, by which time I was already no longer able to run. Years later, there is absolutely no doubt to anyone that there is something wrong with me from a physical standpoint, as I have a pretty aggressive case, and it has been somewhat refractory to treatment.

But, over the years I have evolved my viewpoint to think of myself as a healthy person who has a disability, I don’t see myself as a “sick person” regardless of how CIDP might be “abusing” me at any certain point. People may think I had a stroke, have MS, had polio, got in an accident, whatever – it really makes no difference to me – they just see that I’m physically more challenged, and that’s cool with me. On rare occasion, someone will show interest in exactly what issue is causing my disability, and I will happily discuss. But, at the core of the issue, I choose to picture myself as a very healthy, robust individual who just happens to have a physical disability. I enjoy looking healthy, tan, trim, etc. and thinking I’m keeping everyone fooled! It’s nice when people say to me “you look great” even when I may not feel so great. I think the Stages of Grief apply to the mental process of dealing with a disabling condition, wherin you eventually reach a point of peace – not that I’m complacent and won’t try any cutting-edge medical treatment that my doctors recommend, but I don’t really grieve over physical losses much anymore.

Please know that I’m not judging, or “talking down” to any other people’s situation and how they are mentally dealing with CIDP or chronic illness, because I’ve been where you are, and I understand and have great empathy. I’m merely offering how the viewpoint of one CIDP “old-timer” has evolved in the spirit of offering up hope, regardless of where this stinking disease takes you in the future.

Best regards to all,

Bill

Bill,

I like your attitude!:)

Rhonda from Canada

After 16 years of CIDP with all those years being treated with PE or IVIG I agree with all you had to say BillT. If asked how my health is I always say “excellent” because to me it is. I am in excellent health I just have a handicap. I too am happy to discuss CIDP if someone (rarely asks) wants to know. I too recognize that this is just me and not you. My way is neither better nor worse than your way – it is just my way.

Thanks for helping uplift Bill.

Life is full of choices. Life is also full of opportunities. You find what you look for.

Have a great day

Dick S