How Not to Become Invisible

It was worse than just being ignored. The problem was this arrogant nurse was trying to make me feel invisible - As if I didn't exist - And that I just couldn't permit.

It happened at the clinic. This nurse was a freelance RN hired exclusively by another patient to do her infusions at my Doctor's office, and from day one this RN made it clear that she was above the rest of the staff and patients, using silence as the weapon of choice. Regardless of whether my greeting to her was "Good morning!" or a simple "How are you, today?", for four full weeks she did not respond or say a word, until yesterday. That's when she got my dander up.

As I was seated in the infusion recliner, right at the critical point when my Nurse Gwen was trying to enter my vein for infusion, the RN decided to stand next to me as if I wasn't even there, and speak over my head to Gwen with a negative comment.

"Took me four sticks the other day," she said, disparagingly; which is just about the last thing you want to hear when there is a needle poised over your hand. Of course, it both shocked and distracted Gwen, so as she paused, I decided to fill the space with my voice. My intention was to both rebuke the RN's rude behaviour, as well as illustrate the fact of my existence in the room to her. It was as if I was repeating Oliver North's lawyer, Brendan Sullivan's famous line, "Hey, what am I, a potted plant?"

Shocked and corrected, for the first time in a month she actually looked at me, saw the dilation of my retinas, mumbled an apology, and shrunk back to her corner saying something about her understanding my point.

For those of us who have physical challenges and sometimes obvious disabilities, it's easy for some people to devalue us...

* to misinterpret our lack of stamina as a lack of stature;
* to view our weakness in posture as a weakness in character;
* or to actually take it as far as this RN, and instead of looking at us, or engaging with us, to look past us, over us, or even through us, as if we didn't even exist.

In the original "Invisible Man" series of films produced in the 1930's, the character played by Claude Rains visibly disappears after drinking some concoction, which at first seems advantageous, but over time proves problematic. After enjoying a few fleeting benefits of invisibility, most of the film is about Rains' struggles to be noticed and taken seriously, through his actions, deeds. or when a voice comes out of "nowhere."

Have you encountered people in your circle who patronize you? I call that an attempt to make me invisible, and whether it comes in the form of denial by loved ones, or just plain arrogant behaviour by people in public, I've learned that the only way to counteract invisibility in their minds is with strong actions that make me clearly visible to them - sometimes even including a very loud "voice out of nowhere."

Let me list a few of the ways I change things up from day to day, to make sure that despite my challenges and disabilities, I'm not invisible to those around me:

I Change the Tone and Timber of My Voice - Whenever I feel people aren't listening to me, I'll lower my voice to a whisper, or raise it above neutral. The former requires people to shut up and lean into me to hear, the latter snaps them out of their stupor. The main thing is, I speak at a volume differently than normal. Because I've lived all over the world, I'll also occasionally change my accent. I can speak Southern Californian English as well as the Queen's English, but often if I add my Spanish accent it gets the person's full attention.

I Change the Style and Substance of My Clothes. The fact that my body feels like a dirty washrag doesn't mean I have to dress like one. I've found that the more I dress "up," the less people look "down" at me. A TV producer once told me that the goal of every one of her celebrity clients was to "fill the room" when they entered it, and I've adopted that axiom. So even when going casual, I'll usually pick an embroidered, "True Religion" shirt like "Dog the Bounty Hunter" wears, rather than just a plain white one. It's hard to be invisible when you look like a walking billboard.

I Change Mode and Method of My Communications. If some people usually get emails from me, I'll change it up and call them by phone. If others only receive written letters from me, I'll send them an instant message. In public places with bored workers like Bank Tellers or Fast Food Servers, I'll place my order in a rhyme or a song, just to snap them out of it. By changing the wrapping of my words, I get better reception for my words.

I Change the Scent and Strength of My Cologne. This is right out of Schindler's List, and it is a really simple rule - if they can smell you, they won't forget you, and you are not invisible. I make sure I buy the highest strength cologne, usually brands from France or Germany, or the Bond line from London, which have more scented oil so that my fragrance lingers in the room after I leave.

I Change the Substance and Source of My Credentials. Because I have had over 20 jobs in my life, in a variety of industries, I can "be" a lot of different people depending on the need of the moment. I've shared earlier how on airline flights I sometimes mention that I am a pilot. Sometimes when I can't get service out of certain government functionaries I show them my press pass, because to this day I still am a reporter. One of the best credentials I use when I don't get good service is to mention that I am simply "a regular customer" who will be writing a letter to the President of the organization about my experience with you - and how this story is told "depends upon you, right now. So, let's start with the spelling of your last name." Even if they still treat me with contempt, I guarantee you I am no longer invisible to them. Ever again.

After my infusion that day, long after the rude RN and her only patient left the clinic, Gwen and I were the only two remaining, so I said to her, "Hope I didn't cause you any stress with my comments earlier."

Gwen replied, "After 4 weeks of not talking, I was in complete agreement with you. I was glad you said what you did."

"Yeah," I said, heading to the exit and elevator, "sometimes you just need to speak up, even if it is a "voice out of nowhere."

Gwen gave me one of her super-warm smiles, and I left the office happy.

As the elevator door opened, with my head down, I almost ran into a woman exiting, who I had seen in that building a few times before, but I didn't know her name. I was just about to say "Oh, excuse me," when she exclaimed, "Wow, nice shirt!"

"Thanks," I replied, "Nice of you to notice."

"Hard not to!" she said, sincerely, with a smile.

"Mission accomplished" I said to myself, and to Claude Rains, if he was listening.


I enjoy your posts and insights into Ampligen treatment and would love to have access myself to such treatment options.

However, for a guy hiding behind an anonymous web name, I find this lacking in integrity with your actions.

You need to dig deeper.

You're afraid to be outed as a CFS outcast and the associated social, emotional, financial and perceptual problems and barriers that will be raised against you. In essence, like any seriously injured animal, you are in the corner snarling or HIDING behind anonymous posts while snarling at those who are closing in for the kill. Don't worry, not a judgement but an observation -- so are the majority of us on this board, including me.

You're afraid of facing the impending powerlessness to treat your affliction that will certainly come unless you have a trust fund to continue funding $10-20K/year for ampligen or are one of the very few whose immune systems mutate in such a way as to no longer need ongoing Ampligen infusions.

You're afraid to face the powerlessness and full membership addition to the "useless eaters" club Kissinger and the powers that be want to mass murder. How are they doing? Quite well this post suggests.

Welcome to the club no one wants to join. You'll get your full membership card in the mail sometime after all of the following have been completed:
1. Your finances are exhausted
2. Your family and "friends" have abandoned you
3. Your marriage is on the brink of divorce on a regular basis although you wife continually tells you she loves you but can't take the stress any more
4. And you have died long before you would have of something the powers that be label as "normal" like a heart attack or cancer, or even suicide.

"We are programmed to receive. You can check out anytime you like, but you can never leave."
Wow! Thanks for the lucid response, and the laugh.

Fortunately, I’ve been to England so I understand and appreciate dark-humour, and unlike some Americans even consider it one of the highest forms of honest communication. I can really feel your pathos behind, and in between your lines, and without hesitancy can say that you have made your point “spot on.”

Thanks for articulating the harsh truths of our dilemma without moving into nihilism.
However I might suggest that there may be some folks reading your commentary who won’t catch your smirk, or see the “wink” in your eye as I do, especially as you refer to obtuse things like Kissinger and by implication everything from the Illuminati to the Tri-Lateral Commission. You won’t get any argument from me about the incompetence of the FDA, or the greediness of the big drug companies, and if you want to infer collusion or even a conspiracy by those groups you’d have my vote.

That the system is stacked against us legislatively as well as financially is also a point that I would agree with. I would just object to some of your conclusions as described in your membership requirements.

Yes, I’ve spent a ton of money and a lot more fighting this disease, and Ampligen isn’t cheap. And I’ve already been divorced, but I’m happily remarried to wonderful woman who understands this fight and is in it with me. Sure, some friends have abandoned me, but others have not, and our friendship has been strengthened during this time. I’ve even found new friends on boards and forums like these.

I might have been checked into the “Hotel California” without my consent, but I sure as hell am going to do everything I can to check out on my terms.

After all is said and done, isn’t that your posture too?

Again, thanks for the great commentary. Really made my Saturday night!
I Change the Scent and Strength of My Cologne. This is right out of Schindler's List, and it is a really simple rule - if they can smell you, they won't forget you, and you are not invisible. I make sure I buy the highest strength cologne, usually brands from France or Germany, or the Bond line from London, which have more scented oil so that my fragrance lingers in the room after I leave.
Please, please, please, oh please, do not, I repeat, do not wear cologne or other scented products when out in public, especially when at a doctor's office. It is intolerable to many of us with ME/CFS and can be very debilitating.

Did I say please?
I absolutely agree with gracenote

.....I enjoyed the rest of your post (well maybe not enjoyed since the subject is a bit depressing, but you know what I mean), but I totally cringed when I read that about the cologne......having severe MCS and having stopped breathing from it (as well as having experienced many other bad symptoms), I get pretty upset with people who insist on wearing anything scented

plus, even for those who don't have MCS, wearing scented products is asking for trouble down the road as many have ingredients that are classified as hazardous waste (they get away with putting them in fragranced things bc they are not regulated the same way as food and drugs are)
I absolutely loved this post of yours. Great writing. Great thoughts. I like that you are fighting hard, and doing so with integrity.
Thanks for taking the time to write this.
And the issue of anonymity is an interesting one. I know I've wanted to be more transparent, but sometimes, the costs of doing so, on the web, in public, are just too high, especially for those who are still in the workforce, even on a part time basis.
On "the club no one wants to join" -- my biggest issue here, as I think it is for many, is the name of disease. I mostly simply refuse to identify with it. Not because I don't want to be part of the community, but because accepting such an idiotic name for it, ie. "CFS" feels like a complete capitulation. I use other diagnosis. I call it dysautonomia. I say, I have "an autonomic disorder" and describe it more fully if the enquirer is genuinely curious. It's my way of telling the folks who coined the name "CFS" to kindly go f*** themselves, because that does not describe my symptoms or my disease.
On the membership card disagreement: To get a membership card, all those are required. To be part of the group, not so much. Membership cards are sort of like medals for bravery or going beyond the normal call of duty. We expect that sort of thing out of good writers here in the states.

You know, the whole immersion journalism deal except not nearly as self-indulgent and allegedly fun as that guy in "Where the Buffalo Roam" - what's his damn NAME?
Yes, Tammie and GraceNote, you are correct. I do not wear cologne or any chemicals to my doctors' office or clinic, but only when I go out on the street in public. Perhaps I should forego these althogether. Good suggestions, thanks!
Splash on the cologne, Kelvin. Our first indignity is our disease and the horrible implications that it isn't real. Our second indignity is feeling "invisible" like you say. I believe the first indignity ignites the second making it almost unbearable. The idignity of anonimity is so powerful that it moves us to take action. I may borrow your very creative suggestions.

Thanks for the article, Kelvin. Again, you're right on.
Great Blog (as usual), Kelvin,

I used to love top of the range perfumes years ago, but unfortunately now I'm one of those with a sensitivity to perfumes, strongly scented flowers & chemicals.

But I DO agree with you. We've got to "stand up & be counted". Make your presence known. In the case of people who rudely ignore me, I speak up in a loud voice & let them know.
Kelvin...I would love to read your professional work! Always love reading your articles, keep it up.
Brown Eyed Girl, as I and others have pointed out, cologne and other scented products can cause very bad, even life threatening reactions, in those of us with MCS (& there are many), while I understand what you are saying re indignity, I absolutely disagree with the cologne idea.....causing harm to others does not help one rise above indignity.....the other ideas Kelvin mentioned are great, though

Kelvin, I am glad to know that you don't wear cologne to the Dr....not wearing it at all would be better still : )
Thanks for the comments Firefly!
RE: The issue of anonymity on Forums or Blogs, for me it isn't an issue of "hiding" or not being candid---I think most who read my posts here and elsewhere would tell you I usually let it all hang out. Most webmasters and Forum moderators today recommend using screen names or some abbreviated version of your real name primarily because of the problem of hacking and identity theft. It's compounded if, like me, you make occasional financial donations to support Forums like this. Do any search on Google on public forums and you'll see at the top of the list warnings against using your real name. Not because the community here is criminal, but because there are professionals all over the world who "troll" for identities in Forums like this one.

Additionally, in my case, I had to get my Doctor to sign off on the fact that I was documenting my journey with Ampligen in real time, which we agreed would only be permitted if I didn't reveal the actual names of people in my story. It's not just because of HIPPA laws, but because I am receiving Ampligen in a "clinical trial" where my identity has to remain a secret until the entire protocol is finished, we didn't want to risk anyone being able to decipher who I was and risk my standing or the case-study.

Of course, anyone who is so inclined can always send me a personal private message using the tools on this and other forums.
Good sense or scents? Of course, Tammie and Gracenote, scents are no laughing matter to those with MCS. I should have used a different example.
Brown-eye Girl, thanks for your response......I know that I can be a bit adamant re scents and other common MCS triggers, but I am really out to educate as many people about these as possible - that's partially bc I have stopped breathing on a few occasions from MCS, and have had other really bad reactions, but it's also bc so many of those things are truly toxic (even if people don't have obvious immediate reactions)

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