Posted in Fibromyaloga, rheumatoid arthritis

When no one understands: Autoimmune Arthritis

Having an invisible illness means that your condition has no visible signs despite the emotional and physical struggle and symptoms that you have to fight and live with every day. When someone is diagnosed, acceptance is something that you eventually come to terms with because in order to live your life in the best way that you can, you need to know your disease through education and you need to treat it through medication, medical expertise and through strength and perseverance.

While acceptance, strength and perseverance are difficult tasks, they do not compare to the difficulty in making others accept, understand, or acknowledge what is simply out of your control. The skepticism from others about your illness can last for a long time and can even cause emotional strain that ruins relationships and destroys self-worth and character.

How do you cope when those you love and care about will not acknowledge, understand, or accept your disease? How do you cope when your coworkers, your bosses, and even your family and friends stare at you with skepticism as if you are somehow making up this disease or that you cannot possibly be physically ill and if anything, it is all in your head? How about the years of visiting one medical provider after another and receiving misdiagnosis after misdiagnosis with further questions about your mental stability from the very people you have turned to for answers?

The Autoimmune Arthritis disease I suffer from is rheumatoid arthritis. In addition to RA, I also have fibromyalgia.

Symptoms of RA include (and this in addition to joint pain): fatigue, lack of energy or appetite, low grade fever, muscle ache and joint aches, stiffness, nausea and flu-like symptoms. Moreover, inflammation can affect organs and other areas of the body. Inflammation can also be founds in the eyes and mouth causing dryness. Other inflammation can be in the lung lining which leads to chest pain when breathing, shortness of breath and coughing. Chest pain can also be a result of inflammation of the pericardium (tissue around the heart); chest pain intensities and changes when lying down or leaning forward. Moreover, rheumatoid disease also can reduce the number of blood cells causing anemia. Source: Medicine.Net.

The hardest part for me dealing and living with Autoimmune Arthritis and a second invisible illness is cognitive issues such as short-term memory loss, attention and concentration, brain fog, etc. Fatigue is frustrating to say the least. It limits me, it robs me of energy, and people in my life don’t always understand how tired I am.  There are days where I feel fine and there are days where I drag myself out of bed because I feel like I am in my 80s. I hide my pain because I hate dealing with skepticism, judgment and dirty looks from others just because I don’t feel well. I keep my pain levels to myself and I keep moving because I don’t want to be “one those sick people” who complains about their health all the time. Trying to maintain a positive attitude creates a lot of anger and resentment no matter how hard you try. RA has changed my whole life. The pain never ends and I am always tired. I guess I wish I knew what “normal” was. There are activities I have had to limit or stop doing all together. I worry about the future and I hate the grim future of this disease. I hate that it affects those I love, and I hate the disappointment I see in their eyes when they see me hurting.

None of us wants to be sick and none of us wants to be “one of those sick people.” It is a poison fruit we have been handed. However, it does not change who we truly are.

I have RA and Fibromyalgia, but I am still me. I am a still a wife, a mother, a daughter, a sister, an aunt, a legal assistant, a student, and a friend. I like to write, sing in the shower, drink coffee, dance in the rain, play with my children and act like a child when I am with them, watch 24 and Days of Our Lives, and I am a dreamer. Just because I suffer from Autoimmune Arthritis and an invisible illness, it doesn’t mean that of any less of these things.

It doesn’t mean that anyone who struggles and lives with Autoimmune Arthritis is any different from rest of you.

  • What if autoimmune arthritis conditions were universally understood, so you never again would hear, “well you’re too young to have that” or “why don’t you take some aspirin to make the pain go away” or “but you don’t look sick”?
  • Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing obnoxious, debilitating fatigue that is not necessarily remedied from rest or a good night sleep?
  • What if there were in-depth, age-appropriate exercise programs in place that catered to different levels of disability and fitness preferences?
  • How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients?
  • What if there were a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability?

Hopefully beginning in 2010 these wishes will start to become a reality.

The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer.

Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.

If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. Just like you may see while checking out at grocery stores and other retail establishments, the IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.

To view a complete list of start up costs and to send your $1 donation, please visit


7 thoughts on “When no one understands: Autoimmune Arthritis

  1. RA and fibromyalgia are only a part of the whole person you are, Lana. Thanks for the informative, heartfelt post. Perhaps this new organization will launch a new era in both fighting autoimmune arthritis and supporting those who have it.Wren

  2. I cried reading your post….For you, for me, and for all the others out there. I get so tired of saying, "I'm too tired"…

  3. When we first found out I had Endo it definitely took a toll on our relationship. It was hard for my husband to understand why I didn't have energy, or why I was depressed sometimes over having a chronic illness.

  4. My hubby and i have been looking at this page and have found it to be surely handy. I would greatly be grateful for just about any assistance.Not long ago, Louisville has come forth as a major gathering place for the health care and medical sciences establishments. Louisville has been key to breakthroughs in heart and hand surgery treatment as well as cancer healing. Quite a few of the earliest artificial cardiovascular transplants were done in Louisville. Louisville's blooming downtown medical research campus includes the completely new $88 thousand rehabilitation town, and a health and wellbeing sciences analysis and commercialization recreation area that, in conjunction with the University of Louisville, has lured nearly Seventy leading researchers and research workers. Louisville will be also house to Humana, 1 of the nation's premier health insurance policies businesses.Louisville is home to numerous major organizations and institutions.

  5. Wow. Thank you so much for articulating so well and so clear all that you have on this page. (And BTW your picture is freakin' hilarious!). I fall into that strange land of chronic fatigue, the experiential dynamics of which are just as you discribed though of course it's a different dis-ease. Today I'm wishing to build a stronger interior life as I continue to face a world, workplace, friends and family who cannot comprehend, though I've tried. My health crisis is also invisible to others; I look fine. What an amazing thing. May we all receive the grace of self esteem and inner wellness as we continue on. Again, kudos to you!

  6. Wow I feel the same way I’m in pain all the time and no one can see it or even belive my sickness im sad all the time i cry all the time it hurts me that my loved ones don’t understand my illness I have no help i do all the house work I feel tired i can’t lay down couse my partner thinks I’m lazy when I take my brakes I hide when I get so so tired so I could get a little bit of rest I have no one to turn to but me my self but I stay strong for my kids although I’m in really really bad pain I just play it out .

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