But, you look great!

But you look great

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What is Invisible Illness?

Renee Fabian, Author of Talkspace blog explained it this way:  “An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others. This includes chronic physical conditions such as arthritis, diabetes, fibromyalgia, and others — but also mental illnesses. Living with an invisible illness often leads to judgment and criticism because others believe you look fine on the outside, and therefore must be “making up” your suffering.”

not in my head
I shared this graphic from social media. not sure who the original credits go to.

Chronic pain is another broad term that covers a wide range of invisible illnesses that cause extreme pain, and so many of these diseases have “flares” meaning that you usually have very good days then followed by very bad days, which are known as the “flares”.  During the good days, you, of course, want to go and do things that any normal, well person would do, things you enjoyed before you became ill.

So then when you are taken over by another flare many people just do not understand what is wrong with you.  They wonder how can you look healthy, even seem fine a few days ago, to now say you are so sick you can’t get out of bed today?   It is such a vicious cycle of frustration for those of us that suffer from an invisible disease or chronic pain.  We want, and really need for people to understand, but the honest truth is that until you or a loved one actually lives with one or more of these conditions, you may never fully comprehend the full capacity of how chronic disease can take over your body and your life.

List of Invisible Illnesses:

I will provide just a shortlist of some of the more common ones below:

  • Allergies and Food In-tolerances
  • Rheumatoid Arthritis
  • Cancer
  • Chronic Fatigue Syndrome
  • Fibromyalgia and Chronic Myofascial Pain
  • Depression and Mental Illness
  • Diabetes and other Blood Sugar Issues
  • Digestive Disorders (such as; IBS, colitis, Celiac, etc.)
  • Headaches, Migraines, etc.
  • Heart Conditions
  • Infertility
  • Lupus
  • Lyme Disease
  • Multiple Sclerosis
  • Neurological Diseases
  • Sjogren’s Syndrome

Keep in mind, this is truly a shortlist, there are many, many more and I barely scraped the surface in making a list.  I personally suffer from at least 8 of those on that list, now think about the fact that the CDC recently stated that six in ten Americans live with at least one chronic disease, like heart disease and strokecancer, or diabetes. These and other chronic diseases are the leading causes of death and disability in America, and they are also a leading driver of health care costs.

The Invisible Disabilities Association, in an article about defining invisible Disabilities they said they do not maintain a list of specific illnesses and diagnoses that are considered invisible disabilities. Invisible disabilities are such symptoms as debilitating fatigue, pain, cognitive dysfunctions, and mental disorders, as well as hearing and eyesight impairments and more. There are thousands of illnesses, disorders, diseases, dysfunctions, congenital disabilities, impairments, and injuries that can be debilitating.

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Do you or a loved one live with a chronic and/or invisible illness?  Have you dealt with the embarrassment or humiliation of strangers or maybe even friends and family making remarks about how you look fine so why do you claim to be sick?  Those of us suffering from invisible illnesses quickly learn how to wear our “masks of wellness”, we practice how to smile and wear our veil of feeling good.  We learn how to move, walk, stand and sit without letting that “grimace of extreme pain” reach our face in hopes our friends won’t notice.  We do actually “suck it up” and accept the invite for coffee, lunch or girls’ night out at least every third time your friends have asked so that they don’t feel you are avoiding them or “faking” your illness.  Let’s face it, we really do want to go out with them, socialize with our friends, feel normal and not sick, even if for just a couple hours at time…  Even if we suffer for it for the next two weeks, we desire whatever time of normalcy we can eek out whenever we can.

Your calendar is not filled with fun social events you want to attend, no your calendar is filled in with doctors’ appointments, and not just one doctor, you now have a primary care and many specialists as well as a pain doctor.  Along with my primary, I also have my pain specialist, my cardiologist, my gastroenterologist, endocrinologist,  neurologist, and a hematologist.  Most of these I see several times a month, at least every two weeks if not more often for some.   Oh, let’s not forget I also have to see my kidney specialist, and my Ear/Nose/Throat specialist each once a year at least, unless I have problems before that yearly exam.  All of this going on when it hurts to ride in a car and I’d rather just pull the covers over my head, roll over and go back to sleep every morning.  Which is, of course, a major symptom of my depression that is brought on by my chronic pain, see my vicious circle repeating here again?

Hilton Hotels

There really isn’t a good way to explain all this to  someone that doesn’t an invisible illness or help care for a loved one that suffers from one, except for on those rare occasions when you run across those few people that do get it because they can easily understand things that they cannot see with their eyes!  Because you just have to believe me, living with chronic illness, especially when it involves chronic pain, I wake up every morning so stiff that it takes time to just endure the pain of stretching out and getting up to the bathroom.  I feel like I have the flu every morning and it takes me at least twice as much time to move around and get dressed as it does a normal “un-sick” person.

For the past eight months, I have suffered from iron-deficient anemia.   I’ve suffered from anemia off and on throughout my life and have been on iron supplements to help correct it, but my red blood count dropped so low that I was hospitalized to receive blood.  Then with further testing, and seeing a hematologist it was determined that my body was not absorbing iron and therefore could not produce new red blood cells.  So during the whole month of July, I had to travel to the hematology/oncology clinic and receive iron via intravenous infusion once a week, every week.  Hopefully, my body was able to absorb the iron that way, I go in tomorrow (Sept 3, 2019) for lab work to measure if this treatment worked for me.   During the time I was so deficient in iron and I was anemic, I was totally exhausted and could not stay up out of the bed.  I could not stay awake more than 1-2 hours at a time.  Without enough red blood cells, I was not getting enough oxygen carried throughout my body.  It was miserable, frustrating and exhausting to say the least!  I can say this entire month of August, after completing the iron infusions I have felt a lot better!

On top of the pain and stiffness, I have to watch what I eat, if I don’t then I’ll suffer for that as well.  I’ve recently found out that I also have celiac disease as a reaction to gluten intolerance.  Now I get to add gluten-free to my already restricted diabetic, iron-rich, low-cholesterol,  heart-healthy, diet of foods that are easy to digest due to my gastroparesis.  So once again I get to start gathering new recipes, adjusting my diet and lists of foods I can have.  I also get to clean out my pantry and start re-stocking it again according to this newly added diet requirement.  Living healthy (and happy) for me is a continuous learning and adapting process.  I know I’m not alone on this journey.  Let me hear from you!  Tell me what illnesses do you suffer from?  What have you tried that helps you cope?  Please share or point me in the right direction of any great healthy recipes!!

until next time,

Sharon

Halo Hair

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