Being Invisible ~ #MondayBlogs

There are those of us who hide invisible illness, chronic conditions, pain and fatigue as much as we can. No matter how we hide sometimes it is unavoidable and it’s frustrating when the invisibility turns you into what others may assume is a hypochondriac or just lazy. We function at home, in jobs, with our families or running errands around town, and we don’t look for excuses…

But sometimes the pain or fatigue gets to us and we need a little time to recoup, to rest, to let an analgesic help a bit, or to simply catch our breath and those are the times when someone, usually well meaning, comes along and suggests that perhaps we should get to bed earlier, or keep moving to stretch the muscles, or not need so many bathroom breaks, and many more bits of advice. The truth is that no one else, unless they’ve been there, understands what we go through and sometimes it actually hurts when they tease and call us lazy or slow. These same people do mean well but unless they see a cane, a wheelchair, a placard in our car window or other aids to help a person function, they just don’t understand.

None of us wants to wear a banner across our chests or announce to perfect strangers what our invisible condition may be. Our invisible conditions aren’t contagious (if they are we know how to protect the people around us), they don’t make us any less of a functioning and contributing adult; some children also suffer from invisible conditions. These syndromes can make us weak, cause pain, make us dizzy, short of breath, hungry, thirsty, and make us so tired we can’t keep our eyes open. Most times we manage our symptoms and if we are lucky some of us can even forget for a brief period that we have a “condition” — maybe that’s why it’s so easy for others not to realize that sometimes the symptoms do get the best of us.

The following is not a complete list but includes some of the types of conditions that are not obvious to others: depression, anxiety, Ehlers Danlos Syndrome, Epstein Barr, Chronic Fatigue, Fibromyalgia, Celiac Disease, diabetes, cardiac abnormalities, migraines, Crohn’s disease, narcolepsy, food allergies, arthritis, PKD, hypoglycemia, colitis, IBS, epilepsy, Lyme Disease, Lupus, asthma, Meniere's Disease, phobias, hyper/hypo-active thyroid, and many more. Most laypeople reading this partial list will not be familiar with most, if any, of these conditions. There are even several doctors who are unfamiliar with the presenting symptoms and there is often misdiagnosis. Sometimes the patient is even told that it is all in his/her mind.

While many with chronic conditions have developed coping skills and can manage work and other activities with little interruption, some people do need extra consideration, and some cannot manage to take care of their home without help or hold down jobs. According to the Americans with Disabilities Act of 1990 (ADA) “an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.” There may be provisions to help an individual but many of us know that if we let a potential employer know that there may be days we won’t be up to doing our jobs the chances of being hired go down, so we don’t put our invisible condition on record. …when we call out sick too many days, well you have an idea of what happens.

The next time you see someone waiting for an elevator just to go one floor, or parking in a handicapped spot (WITH a proper placard) but doesn’t “appear” disabled, or someone asks for help to carry something (and you can help), or even just walks slowly, please don’t be so quick to criticize. Realize that maybe that person coming out of the handicapped stall in the bathroom needed the higher seat because of a back problem. And just because you saw your co-worker dancing at the holiday party it doesn’t mean that he/she can do the walking at the company golf-outing, it just may be an off day. While admittedly there will always be someone who cheats and takes advantage, most people do what they are capable of and know when they need a little help. While some people with an invisible illness may feel comfortable in letting you know about it, they are not obligated to prove anything to you.

To your health!

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The Invisible ~ #MondayBlogs

There are chronic illnesses that can’t be seen by others but still can make a person feel like sh*t. Sufferers of these chronic conditions deal with pain, exhaustion, muscle weakness, shortness of breath, dizziness, ringing in the ears, and more “lovely” annoyances. In some cases, what is more annoying is the lack of compassion and support for people who undeniably feel like they are very much alone. Constant accusations of laziness, hypochondria, excuses and outright lies can send a person who already feels desperate into complete despair — feelings of growing depression only seems to magnify the general feeling of CRAP.

Some Invisible Illnesses are diagnosed through blood tests, scans, and fevers, but there are others that even the medical community cannot prove scientifically. Sometimes it is only repeated symptoms that are used to make a diagnosis and even less is known about treatment. Even some doctors label these conditions as “meaningless catch-all phrases” for non-existent illnesses. It’s beyond frustrating when a patient knows that something is wrong and yet no one will even acknowledge it. Well-meaning family members and friends try to be encouraging, but there constant advice to “why don’t you just get to sleep at a decent time” or “get up and move and you’ll feel better” actually feel like pin pricks. Anger just adds to frustration and depression.

Some examples of invisible illnesses are: Allergies and Food Sensitivities; Rheumatoid Arthritis; Cancer; Chronic Fatigue Syndrome; Fibromyalgia and Chronic Myofascial Pain; Depression and Mental Illness; Diabetes; Ehlers Danlos Syndrome; Epstein Barr; Headaches; Migraines; Congestive Heart Failure; Lupus; Lyme Disease; Multiple Sclerosis; Osteoporosis; Neurological Diseases; Sjogren’s Syndrome; and more. (thanks to Molly’s Fund and the CDC for help with this list). Chronic diseases are associated with more depression, increased mortality, higher divorce rates, and worsening chronic conditions. The CDC estimates that approximately one out of every two Americans suffer from some degree of chronic disease at some point in his life. Most chronic sufferers do not use any appliances (like canes or braces), but as the condition progresses they may move on to needing these aids.

Everyday life is more difficult for anyone with a disability. The Americans With Disabilities Act does protect the rights of anyone with a known disability, but when that condition is invisible and the patient is doing his or her best to be “normal” and accepted, there is often no such thing as rights. Very often it isn’t mere pride that keeps a person from sharing their confidential health history; “normalcy” is more accepted, hired more often, considered for promotions, and not made to feel like a burden.

Just because someone can’t SEE a disability doesn’t mean that it doesn’t exist.