Open Letter to “Normals:” Please Read

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, “But you did it before!”  There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill

The Autoimmune Puzzle PART 1

“What does “autoimmune” mean?” “What’s the name of your disease again?” “Wait, could you slow down so I can write that down?”  “My friend has (insert any number of conditions), is that like yours?”

Those of us with chronic conditions can all relate to receiving these inquiries, from close family to just met strangers, almost daily.  And now that I live in the vortex of the autoimmune cyclone, I forget that the average citizen doesn’t know what I mean when I toss around random medical terms, speaking the unique dialect of the “autoimmunie”.

Can you name one autoimmune disease?

If not, you are not alone!  In a recent Roper poll, less than 6% of Americans surveyed could identify an autoimmune disease. It’s time to change that statistic!

So, today, I am going to begin a series of posts to Untangle the Mysteries of the AUTOIMMUNE Puzzzle:

When people hear the term “autoimmune”, they interpret it in all kinds of ways… from HIV, to AIDS, to cancer, to the flu… anything they relate with “immunity.”  My typical layman’s definition is: “There are hundreds of autoimmune conditions.  The most commonly known ones are M.S. and Lupus.   Basically, it’s when the body turns on itself and starts attacking a variety of systems and organs.  It can attack the bones and cartilage, the skin, the nervous system, internal organs; basically anything it perceives as an ‘enemy.’”

Then I usually experience dumbfounded silence or a new barrage of questions: “What causes it?” “How did you get it?”  “Can you get better or be healed?”

I remember all the questions I had when I was first diagnosed.  Now its second nature, but it certainly didn’t start out that way!  So, today, I thought I’d go a little deeper to uncover the facts about autoimmunity.  I truly believe that knowledge is power… for the person suffering from these conditions, for their loved ones and caregivers, for our friends, and for the community at large.  If we are ever to get the funding needed to answer those questions above, we need to first educate people on the serious and wide-spread effect these conditions are having on the world!

So… let’s begin at the beginning:  What is AUTOIMMUNE?au·to·im·mune  /ˌôtōəˈmyo͞on/  Adjective: Of or relating to disease caused by antibodies produced against substances naturally present in the body. (from dictionary.com)

“What is Autoimmunity?”

One of the functions of the immune system is to protect the body by responding to invading microorganisms, such as viruses or bacteria and producing antibodies or sensitized lymphocytes (types of white blood cells, important to immunity). This process can be beneficial when the body attacks a foreign substance such as a virus, bacteria or cancer cells.  But it can become destructive when the body misperceives healthy cells and tissue as the enemy, creating antigens against these healthy cells and organs.

“What happens when your body comes ‘under attack’?”

Under normal conditions, an immune response cannot be triggered against the cells of one’s own body. In certain cases, however, immune cells make a mistake and attack the very cells that they are meant to protect. This can lead to a variety of autoimmune diseases. They encompass a broad category of related diseases in which the person’s immune system attacks his or her own tissue.  Autoimmunity includes diseases of the nervous, gastrointestinal and endocrine systems as well as of the skin, other connective tissues and blood vessels (basically anywhere in the human body!).  Autoimmune disease fall under two categories: Systemic (wide-spread, affecting multiple systems; in conditions such as Lupus and Rheumatoid Arthritis) or Organ Specific (in conditions such as Multiple Sclerosis, affecting the nervous system and Grave’s Disease, affecting the thyroid).

“I’m not sure I understand what connective tissue is?”

Connective tissue is the tissue which binds (holds together) all body “parts” (ex: joints and bones) and organs.  Connective tissue includes: cartilage, ligaments, and tendons.

“What causes Autoimmunity?”

The immune system normally can distinguish “self” from “non-self.”  Autoimmunity occurs naturally in everyone to some degree; and in most people, it does not result in diseases. We need natural autoimmunity to survive; to fight foreign substances in our bodies.  The problem arises when the body perceives natural occurring substances (cells, tissues, organs) as foreign.  Autoimmune diseases occur when there is some interruption of the usual control process or when there is an alteration in some body tissue so that it is no longer recognized as “self” and is thus attacked.

“What do you mean, ‘under attack’?!”

 Autoimmune diseases arise from an overactive immune response of the body against substances and tissues naturally present in the body.  In other words, the body attacks its own cells.  It starts to perceive everything as the “enemy.” (Imagine your immune cells chomping away through your cartilage or bones… I picture a horror version of the game PacMan!)

“Is the process/progression of Autoimmune Disease always the same?”

No, there are many variations on the way a body can attack itself:

• Some diseases are relapsing and remitting (flares of symptoms come and go) and some are progressive (symptoms always present- my disease progresses in this way)
• Some diseases cause a slow progression of the destruction of a specific type of cell or tissue
• While other diseases stimulate an organ into excessive growth
• And still other diseases interfere with the function of an organ or bodily system

Now you’re starting to see the many puzzle pieces in the Enigma of Autoimmunity!

 

End of PART ONE

Be on the look-out for further answers to questions such as:

“Who is affected by autoimmune disease?”

“What are the effects of a prolonged autoimmune attack?”

“What are treatment options?”

“What conditions are considered ‘autoimmune’?”

“What kind of medical professionals treat these conditions?”

“What the heck is Relapsing Polychondritis?”

“What does it mean to have a ‘rare disease?’”

And the BIG ONE…

“What causes the body to turn on itself?!”  (This one’s a gripping tale so you’ll want to stay tuned for more!)

Thirsty for more information or knowledge right now?

Here are top sources I recommend:

American Autoimmune Related Diseases Association: https://www.aarda.org/

American College of Rheumatology:  http://www.rheumatology.org/

National Institute of Arthritis & Musculoskeletal & Skin Diseases: http://niams.nih.gov/

Polychondritis Educational Society, Ltd.: http://polychondritis.org/

***DISCLAIMER: The above information is compiled from my own personal research.  It is meant purely as a starting point.  I encourage you to contact a medical professional with any questions regarding Autoimmunity.  And, certainly if you think you may have one of these conditions or need information about a current diagnosis, contact a physician as soon as possible to receive information re: your conditions, treatment options, etc. ***