Helping women with chronic illnesses
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Perception Deception

Looks can be deceiving. As any person living with chronic illness(es) knows, one can look perfectly healthy and simultaneously be anything but that. A healthy appearance on the outside can be illusory.


People’s perceptions of those living with chronic pain and/or chronic illness(es) can be very detached from the daily reality. The sick person may be open, guarded, or somewhere in between about their medical condition(s) for a variety of personal reasons. For example, a person’s decision to disguise how sick he/she is can be necessary for career preservation in many professions – for those who are able to stay in the workforce at all. Many employers can and do discriminate against people based on their medical conditions. (They may blatantly disregard anti-discrimination laws designed to prevent this from happening).


Some patients may elect not to disclose information for fear of being lectured by well-meaning people who may have suggestions for the patient to “cure” his/her (incurable) illnesses. Seldom do those around the patient know of options the patient hasn’t already investigated or tried. Their intentions may be good but the patient may be tired of hearing about false cures and may seek to avoid hearing about them again. Some “treatment options” may be scams designed to exploit patients and make money off of them. Nearly every person I have ever met who lives with chronic illness(es) and/or chronic pain has invested large amounts of time and energy (not to mention money) searching for the best way to manage the symptoms and improve quality of life.

One may hear about or witness a chronically ill person’s activities on a “better day” – without witnessing things in context – and get a misconception. (“Better day” can be, in itself, a misleading term when discussing people who have chronic conditions). If one does not witness the – sometimes very elaborate – planning that went into that person being able to function beyond his/her “normal state” or if the “crash”/recovery stage that follows the atypical activity isn’t witnessed firsthand, it’s far too easy for the outside observer to draw conclusions like, “she must be feeling better” (with the operative word better, in this case, sounding an awful lot like “all better”… as opposed to “somewhat improved for current symptoms”).


As any person living with chronic pain and/or chronic illness(es) can attest to, looks can be deceiving in the aspect that people only see/hear what is presented to them and what they are open to hearing or understanding. Things are seldom black and white. They are often not as obvious as they appear at first glance. The picket fence above is black against a white background, right? Or is it a white fence against a black background? What one sees at first glance may not be as definitive as it first seemed.

This has been an incredibly busy, unusually active summer for me. The trip alone (written about in three posts you can access via this link) was a massive undertaking. I am still working at recovering from the trip and we got back from it over 6 weeks ago. I still have exacerbated symptoms and fatigue related to the trip. As I’ve written before, I was happy to have the opportunity to travel and to have found a means for traveling overnight that worked for this trip at this time. I am fully aware that I could try the same exact trip some other time and it could be a disaster. I know from living with chronic illness/pain for 29 years now that there were many things that could have gone wrong on this trip that didn’t. In other words, we were fortunate. I also know that a huge factor that enabled us to pull off the trip was that we had lots of built-in flexibility. My husband was fully aware that I might not be able to tolerate any number of potential chemical exposures. It was very important to me to know that early exit was always an option if it became necessary. We knew the risks, planned as carefully as possible to try to avoid risks, and then we rolled the dice.


As grateful as I am that things worked out for the most part (the arguments with my husband over the aspects of the trip that didn’t always work out were not my idea of fun… nor his), I fully recognize that things could have been much more problematic. For example, had the campsite neighbors who were burning who-knows-what (see previous trip posts for details) continued to do so, we would have had to pack up and go home. While I was able to tolerate camping for this summer’s trip (in a way in which I am no longer safely able to stay in a hotel, motel, or Bed and Breakfast)… that doesn’t in any way guarantee that future camping trips are automatically safe. Not by any stretch of the imagination.


The lack of visible signs that a person is ill can be deceptive. There are many medical conditions, including ones that cause debilitating symptoms, that do not cause the person to look sick. There are medical conditions that are categorized as legally disabling that do not result in any visible signs. This does not make them any less debilitating or disabling.

Living with invisible illnesses (also known as hidden illnesses) is physically (and sometimes emotionally) challenging. For me, having to educate people about about misconceptions (i.e. finding the best way to let those around me know that one relatively successful camping trip does not translate to “any challenges I had regarding traveling are now gone”) is difficult. It’s important for friends and loved ones to understand that the same barriers and challenges that were present before still exist (and that just because I managed to “get through” the scheduled time of five days for the trip this summer doesn’t mean that it wasn’t very challenging).

I thought I’d close with the following article link that I found while searching for information on invisible illness and hidden illness. The article talks about a former United States President but I don’t make the reference to veer into politics in any way. I am including the article because I think it demonstrates the fact that even someone who was widely regarded at the time as healthy was secretly dealing with chronic pain. While I like to think times have changed for the better since then in the aspect that people are more open discussing health conditions, I am also abundantly aware that for an elected office (such as the Presidency) it is still taboo to discuss serious health problems with the public. I’m not convinced that it would be any easier today for the chronic conditions mentioned in the article to be disclosed by someone serving in such a position.

Finally, here is a quote from the article that I think many people living with chronic pain will relate to…

“Life is unfair. Some people are sick and others are well.”
~~ President John F. Kennedy

That about sums it up. I’m sending healing thoughts out to you all.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Perception Deception

19 comments

1 DarleneNo Gravatar { 08.29.11 at 10:17 pm }

Jeanne, I can so totally relate. Having “invisible” chronic pain conditions is sometimes a double edged sword. Trying to pretend that we are feeling somewhat normal, often gives others the impression that we are “well”. There is the opposite end of the spectrum however. If we don’t put forward a “brave front” we are looked at as whiners, complainers, and having imaginary illnesses. I had an experience with this about five years ago. I decided I needed to end my marriage. My now ex-husband said something exceptionally cruel, I thought. I had been volunteering for years to keep myself functioning in a work like atmosphere, but without the commitment to always be there. He said to me “now you will be cured of all your ‘imagined’ conditions”!! Had I not continued my volunteering, maybe he would not have made that statement? By trying to appear somewhat normal, I gave the impression that I felt like a normal, healthy person. Nothing could be further from the truth!! I have officially been diagnosed with IC, VV, fibro, extremely dry eyes and mouth as in possible Sjogren’s Syndrome, and a small fiber neuropathy, my latest debilitating issue.

Jeanne, you were very brave to go on a camping trip far from home. Yes, this time you were lucky, and the moons aligned with the stars. It does not mean in any manner shape or form, that you are now good go go on any trips in the near future!!!

I am sorry if I have been rambling. I do feel very strongly about this predicament, so many of us find ourselves in, and through no fault of our own!! Life is quite a challenge with invisible chronic illnesses. To not be believed, or expected to be cured, is a dis-service.

Darlene

2 HolloeNo Gravatar { 08.29.11 at 11:37 pm }

In the state of FL u cannot receive proper pain management unless ur dying! It’s A-OK that those dying not suffer but the living should not only suffer but also b vegetables instead of functional “human beings”. Thanks to Atty General Pam BONDI. No family/friends … gonna end life long MISERY!

3 JeanneNo Gravatar { 08.30.11 at 12:44 am }

Darlene,

You described the double edged sword very well. I’m sorry your ex-husband said things that hurt you. I can certainly understand why you’d be so hurt by him talking about you having “imagined conditions”!! It’s too bad that he couldn’t understand that you were using the volunteering to help others and help yourself in the process. I think it’s commendable that you have used volunteering as a means for having structure in your life (we all need that to some degree, I think) without the commitment a paid job would bring (i.e. more hours, less flexibility in scheduling, etc.) Since I have all but one of the conditions you mentioned (IC, vulvodynia, fibromyalgia, and neuropathy… but not Sjogren’s), I know how challenging they can be!

It was a bit nerve-wracking to take on such a trip but I’m glad we gave it a try. We were fortunate and I do know that it could be different if we try an outing like this again.

You’re not rambling. I know you have strong feelings about this… as do many people who live with chronic pain and/or chronic illness(es). Not being believed is one of the biggest challenges chronic illness patient face, I think. Yes, ever more than the pain itself. Not being believed can gave very detrimental effects on patients! False cures really are a dis-service. Thanks for your feedback!

Jeanne

4 JeanneNo Gravatar { 08.30.11 at 12:53 am }

Holloe,

I am very sorry to hear that Florida’s pain management options are so poor. In regard to your last sentence of the comment, were you referring to yourself? Are you having thoughts of suicide?

If so and if you are in Florida, the suicide prevention hotline number for the US is 1-800-273-TALK (International hotlines).

Please see the post I did about suicide prevention.

I wrote the post you commented on from my own personal perspective combined with info I have heard from some other patients BUT there are many chronic pain/chronic illness patients I know who do not have family/friends (some of whom are very isolated). Please know that you’re not alone and there are many, many fellow patients who care about others in similar situations and who do whatever they can to support them.

I look forward to hearing from you.

Take care,

Jeanne

5 AnnieNo Gravatar { 08.30.11 at 9:08 pm }

Another great post! My only chronic issue is endometriosis, which I’m getting a break from right now. That alone is hard enough to deal with, so I greatly admire you and others who are living with multiple issues.

Having an invisible illness is difficult for all the reasons you mentioned, but I think we can all be glad that we don’t look as bad as we often feel. This is a very good thing :)
Annie´s last [type] ..Ordinary is Extraordinary!

6 DarleneNo Gravatar { 08.30.11 at 10:56 pm }

Annie, It is quite true, none of us would want to look like we feel, a scary thought:) However, that is one of the main reasons many of us are not taken seriously. I don’t think we can have it both ways….

7 JeanneNo Gravatar { 08.30.11 at 11:11 pm }

Annie,

Thank you! I’m glad you’re getting a break from symptoms now. Yes, endometriosis alone is hard enough to deal with… like you said. I greatly admire you for your strength in the face of multiple losses… and for how you have taken what you’ve learned from what you’ve been through to help others.

I think the ‘looking healthy when I’m not’ issue is most problematic for me when one of my own doctors tries to cheer me up with comments like “you look great” at the start of every appointment. I have this one doctor (who I really like) who does this. I know he’s trying to be cheerful or uplifting or something. However, I’m honestly not in need of that sort of lift from him. I am in need of the best medical care available.

While he’s a great doctor, I find myself resisting the reflex to be irritated when he comments on how “great” I look. Such comments from a doctor caring for someone with as many complicated illnesses as I have leave me wondering (momentarily) if he thinks I’m not quite as sick as I am. Then, I remind myself that this doctor is fully aware of all my medical conditions and that he’s not being dismissive.

In my heart, I know he knows that my health is poor. I guess when he comments on my appearance it just makes me think to myself, “who cares how I look!? I feel awful”. I guess it makes me feel like I’m taken less seriously somehow (until I remind myself he means well and does take me seriously). I don’t know.

If I had cancer, I doubt if he’d enter the room and start by telling me how great I look. I actually had cancer years ago. Dealing with my chronic illnesses has been far more challenging than that was. (I obviously don’t mean to diminish anyone else’s pain and suffering and obviously some forms of cancer are far more aggressive/dangerous than others). I guess it just feels a bit marginalizing when every visit with this one doctor starts with being told how great I look. I know his intentions are good; I can’t help but feel irritation when he says it, though. Then, I feel a little guilty that I’m getting irritated about what he said when he’s trying to be nice.

Too many people have given me the “you look great” type of comments (as a brush off) when I feel anything but. I’m talking about people who tell me I look great and then turn around and expect me to be able to do things I absolutely can’t do. It’s like my reality is being brushed aside for what the person wants or expects me to be able to do. I guess it has taken its toll. I know many other chronic illness patients who feel the same way.

Jeanne

8 JeanneNo Gravatar { 08.30.11 at 11:20 pm }

Darlene,

You summed it up here:

“none of us would want to look like we feel”

Jeanne

9 DarleneNo Gravatar { 08.31.11 at 10:27 pm }

Jeanne, I am sorry your doctor thought he was complimenting you. Like we both have been saying, what one looks like on the outside is NOT indicative of how one is feeling on the inside, emotionally or physically!!

10 Jannie FunsterNo Gravatar { 09.02.11 at 11:45 pm }

Hi Jeanne. my family forgets I have a migraine, even after I tell them. So if they can’t tell, a stranger certainly will not.

I think the “you look good” from doctors seems to maybe be something we say in parting like “Have a nice day.” But I know what you meant, it does sound insincere.

My sister-in-law lives with Crohn’s, but you’d never know to look at her. She has always worked part-time because of the fatigue.

Another good post to help people Jeanne. Thanks.

xo

11 Sally SmithNo Gravatar { 09.03.11 at 2:31 am }

It’s bad enough when friends are not supportive but worse when it’s your nearest and dearest.
My husband is being very unsupportive despite the fact he’s seen me at my worst – so weak i couldn’t even chew soft food! Now that i’m able to do more things he’s gone back to leaving me to do it all.
He tells me i’m doing too much and will make myself worse but won’t get his butt off the couch and do the things that need to be done for me! I have 2 kids with special needs so not doing things for them because i’m weak/exhausted is not an option.

Good points Jeanne – thanks for posting x x x

12 beautifuleyesNo Gravatar { 09.03.11 at 12:50 pm }

Article:

Don’t panic!

From the article:

“Hypochondriacs have symptoms in various parts of the body, such as the gastrointestinal tract, cardiac symptoms like chest pain, breathlessness and palpitations, giddiness, aches and pains, weakness, sexual difficulties, etc.”

Sounds familiar to anyone with chronic illness/Autoimmune and Hormonal disorders? No wonder its taken me decades and lots of doctors to get diagnosed..

I’ve actually been asked “Autoimmune or Psychosomatic-whats the difference” :O

13 JeanneNo Gravatar { 09.03.11 at 2:48 pm }

Darlene:

Yes, looks can be very deceiving and it’s very frustrating for patients with invisible/hidden illnesses. There doesn’t seem to be an effective way for patients to get their loved ones to fully comprehend how sick they are, how it feels, and what limitations it generates. They may understand partially but it is very seldom that loved ones truly “get it”. It seems that only fellow patients do that.

Jannie:

You’re right. If our own loved ones don’t remember or fully understand our pain, strangers won’t.

I agree that “you look great” is used by some in the way “have a good day” is. I think this particular doctor says it to me because he knows about all my illnesses, his ability to do much about them is limited (many of the illnesses are totally out of his area of expertise), and he is a very positive person who likes to say something “positive”.

I’m sorry your sister-in-law has fatigue from Crohn’s. I’m glad that she has such a wonderful sister-in-law as you, though, who understands hidden illnesses.

Thank you, Jannie.

Sally:

I think it is far more hurtful when it is loved ones who don’t understand.

I’m really sorry that you aren’t getting the support you need at this time. It is a difficult situation for both the patient and the spouse/partner. It can be incredibly frustrating when people expect us to be able to do more than we are able (or more than we should be doing to avoid exacerbating symptoms). Sometimes loved ones are so relieved at improvements that they forget that we are still chronically ill.

I’m really sorry you’re going through such a challenging time now. Sometimes these things go in cycles (a.k.a. perhaps your husband will come around sometime soon?) He may still be exhausted from when he was doing more intense care giving, maybe? Perhaps when he recharges his batteries, he’ll do more than just tell you that you’re overdoing and pitch in to help out so that you’re not doing so? It must be frustrating for you. I’m sorry. Hang in there, Sally!

Thank you. xoxo

beautifuleyes:

Wow! I don’t even know where to start with a patronizing article like that! It is always unfortunate when patients are discouraged from informing themselves! While it is true that some medical information on the Internet is inaccurate, it is also true that some information online is extremely helpful!

Online medical information can empower patients to ask their doctors the right questions. It can help them find the best doctors for their needs in the first place.

I find articles like this one very condescending. Like you said, it’s no wonder it has taken you decades and lots of doctors to get diagnosed.

There are too many doctors who, like the one who provided input for that article, are quick to assume hypochondria for cases that are complex, hard to diagnose, etc. It’s certainly much easier to just reflexively slap a “hypochondriac” label on a patient than to actually do the work of finding the right diagnosis!

It’s a shame that you’ve been asked “autoimmune or psychosomatic – what’s the difference?” It saddens me that patients are treated this way. It seems that women are much more likely to receive this type of treatment than men. It’s just not right.

~~~

Jeanne

14 DarleneNo Gravatar { 09.03.11 at 7:25 pm }

I agree Jeanne, it’s not right at all. I can’t speak for all men, but it does seem they are taken more seriously by the medical community. For example: many times a woman will go the the ER with chest pains, and be sent home with no diagnosis. Usually, a man would be taken more seriously. Hopefully this is changing!!

15 EndochickNo Gravatar { 09.04.11 at 10:21 pm }

The discrimination often felt because of our illnesses does make us weary of being open and honest with others – especially in the work place. I’ve come up against much adversity because of my health in various work climates, and it’s ridiculous. Yes, laws exist to stop this but it doesn’t prevent them from letting you go for slight reasons that would otherwise be overlooked. This often makes the ill person work extra hard at being the best model employee so employers can’t get those little things.
Endochick´s last [type] ..A link between chemical sensitivity & endometriosis? A reader wants to know…

16 JeanneNo Gravatar { 09.05.11 at 12:36 am }

Endochick,

It really is a shame that so many people face such workplace discrimination. Like you said, just because laws intended to prevent this from happening exist doesn’t mean they are always enforced. It is also true that patients often tend to strive for that “model employee” status for fear they will be let go otherwise. To be clear… there’s nothing wrong with a person doing his/her best, of course, but when patients push themselves much harder than those around them (to over-compensate and/or try to ward off unfair terminations), it’s not fair and it risks them becoming even sicker.

Jeanne

17 JeanneNo Gravatar { 09.18.11 at 1:24 am }

Darlene:

Sadly, it is all-too-common for women’s health issues to be taken less seriously than men’s.

Jeanne

18 DarleneNo Gravatar { 09.18.11 at 10:44 pm }

My hope is that in time this will change. We have a long way to go. Don’t get me started on the inequality of women in our society!!

19 Chronic Illness And The ‘Groundhog Day’ Effect — ChronicHealing.com { 07.07.12 at 12:19 am }

[...] to thinking about the “Groundhog Day Syndrome”, I’ve been thinking more about how looks can be deceiving for people living with chronic illness(es). I’ve written about this before on many occasions, [...]

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