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!

...

Have a good life ~ #MondayBlogs

Pain and grief are personal.

No two people will feel the same pain. For nearly 30-years as a NYS EMT I always asked my patients, as we were all trained to do, "on a scale of 1 to 10, with 10 being the worst pain you ever felt, how bad is your pain?"

The real truth is that one person's "6" may be another person's "10" while someone's "8" barely gets a "2" elsewhere. It doesn't matter, it's all PAIN. As 1st responders we needed to know how the patient was managing the pain, was it getting worse or was it (hopefully) getting better?

It's the same with emotional pain, how we deal with it is individual. Two widows after losing their mates of many years will react differently and neither way is wrong or right. The same goes for other personal tragedies and losses, we all have to find our own ways to cope.

For some people the return to "normal" life takes longer than others, and for some the return never seems to happen. Is it wrong for a young mother to still cry years after a miscarriage, even when she has other children? Or for a man in his 50's to be angry after being hustled out of a long time job he's held for years? 

Human reactions are just that... human - and they are personal.

Somewhere down the line though we do need to regain some living potential again no matter how deep the wounds are. We need to allow ourselves the chance to heal even if it means we never lose our scars. Yes, there are people around us that need us to LIVE again, but we owe it to ourselves not to waste away.

A good friend of mine likes to say "Just put one foot in front of the other..." Healing is a process and no one expects you to ignore the wound or the scars it leaves. But if you let bitterness consume you or never stop crying, think of how much you will continue to lose.

It is so much harder than just these words, but somehow you have to find a way of focusing on what you still have whether they are memories or other loved ones. Whatever is in your past has made you who you are today and who you are is important, don't throw it away.

When I feel down and mourn loved ones no longer here (physically) I remind myself of the 5 of Cups Tarot Card and realize that I need to focus on the positives in my life. 

When my paternal grandfather died and I saw my dad crying I swore to him that I never wanted to grow up because growing up meant people got old and died. After laughing and calling me Peter Pan, he told me that yes, people do die but he was very glad to have grown up, met my mom and had my sister and me. He made me see that life is always giving us new things and we should never ignore the new joys. Years later I miss my parents very much, but I take such joy in my own husband and children. Daddy was right, I would never want to miss out on the life I have now.

I've been told that I have a Pollyanna outlook on life and that I am always looking for the bright side. In reality, I just want to live.

"I am convinced that life is 10% what happens to me
and 90% of how I react to it."
~ Charles R. Swindoll 

The Five of Cups is a Tarot card that signifies difficulty, loss, and the challenges of dealing with that loss. The figure in the card wears a black cloak in which he hides his face in apparent despair. At his feet are five cups, three of which have fallen and spilled onto the ground and the other two behind his back remain standing. He does not seem to notice these upstanding cups because he is so focused on the fallen cups instead. Ahead of him a powerful river flows between himself and a castle or home in the distance. To his right is a bridge that can lead him to the security of the house across the river. Despite the fact that this card has a strong indication of loss and tribulation, there is a positive aspect that must be considered. Is your cup half full or half empty?

I know what you did... ~ #MondayBlogs

Knowing where all the bodies are buried (figuratively) is a daunting responsibility.

Between the easy availability of personal information and things that have been said and done basically in front of me, I find that I have kept many secrets for others. Just search a person's name on the internet, use a genealogy database, find a person's Facebook profile, and simply listening to most people who might tend to get a bit loose with their tongues, and it's not hard to possess secret background info.

Okay MOST of the info is not criminal or earth-shattering to the many, but most of the secrets would cause extreme embarrassment to its owners.

Ironically many people don't realize how much personal information (even details they want to keep hidden) can be found online, are told at family or school reunions, get worked into conversations and sometimes are hinted at or spilled by themselves — especially if the person has had a few drinks  — and then at some point days, or even years, later the truth comes out. Sometimes an individual has fabricated a complete lie (guilt? ego? shame?) and then gets tangled in the details.

I know secrets that some people have tried their best to keep hidden; maybe I was there when something happened, maybe I heard it from another knowledgeable party, or maybe I accidentally came across it while I researched something unrelated for an article I was assigned... but the fact is, I know.

I've heard war stories from someone who never served, about offspring that had no knowledge of half-siblings, know of marriages that weren't really the first for each but that's what one party was told, criminal histories that didn't get divulged even on job applications, certifications and diplomas that were counterfeit, and more. Sometimes anger at someone who has belittled others or been careless about other people's feelings have led me to IMAGINE spilling the beans, I've managed to resist so far.

When faced with knowledge about someone I try to see who the truth would actually cause pain to and resist the temptation; most times the true victim would be a complete innocent. When faced with with an unpleasant truth and then seeing the liar causing more pain (like the father who claimed to but never served making his son feel less than a man because a physical impairment kept the son out of service), it sometimes is so tempting. Sometimes though, no matter how tempting, I know I would crush belief systems, destroy a child's admiration for a parent, and cause emotional pain to a spouse who considers the mate to be the world.

I may not be willing to expose some of these secrets or lies, but that doesn't mean they will never be found out. Someone else may also know and perhaps that someone will act with malice. Imagine the pain a loved one may feel when, after a death, paperwork is sorted for insurance purposes and such and disturbing details come to light and suddenly the loss of a loved one is compounded by not even being able to ask questions or talk about it. And the day you are found out that embarrassment may be multiplied many times over.

If you have a dark secret make sure that those around you won't get blindsided. Most secrets are often a bit of embarrassment to the owner, but they can be a devastating loss to the loved ones who always believed in you. Take away the power from those who may have learned your secrets unwillingly, or even purposely, and allow your loved ones to really know you.