Ask any person who is Chronically Ill what their biggest fear or concern is and they will almost always answer “I don’t want to annoy people with my stories of struggle and pain…”
Its true. We don’t want to.
So what do we say? What do we tell our loved ones or friends? Mostly we say nothing. Share nothing. Suffer silently and let only a few (maybe a handful) of people into our inner circle and hide everything else from people. Mostly we are forced into a position of always lying and downplaying our pain and sadness because we fear it will push people away and make them avoid us. Most people avoid us after a few years of illness anyway.
Its a crushing and brutal reality that not only have our bodies dealt us a cruel and permanent blow, but many of the people we loved and called friends also deliver a very painful blow through their disinterest and apathy.
No one who has been Chronically Ill for any length of time knows what to say to people anymore and most often we feel if we tell the truth we are ‘complaining’ or ‘whinging’. So we lie. We hide. We cry behind closed doors and we reach out to strangers online who understand exactly what its like.
My home care nurse is coming to visit me this week and I thought to myself, “She knows more about me than anyone I know (excluding my husband) … and I don’t even know her!!” She has seen my tears, my ‘ugly’ moments, she has heard about my other life, she loves my artwork, and she doesn’t recoil from me or look down on me. It makes sad that she is kinder than almost all other people I knew. Even if that IS her job, I will take it! I relish it! I need it! I appreciate it so much.
Most people have somehow developed this idea that we (the Chronically Ill) are high maintenance. That we will cry all over them or put them in uncomfortable positions when nothing could be further from the truth! We have learned not to cry or show pain in front of people. We have learned how to hide what is happening inside us. We don’t like asking for anyone for anything or impose on others.
We don’t take people out of their comfort zones and we work like mad to make sure our diseases don’t interfere on others plans. It breaks my heart when I hear stories of people traveling, in pain, on trains for hours, in a wheelchair, to get their infusions, medications and therapies. They sit alone for hours and then, in worse pain, make the return trip while trying not to impose on anyone they know and the general public.
You can clearly see we are not going to spill our diseases and emotions all over people or create situations of embarrassment. The very idea is the nightmare of the average Chronically Ill person!!
When we are too tired to eat, we go without. When we feel alone and frightened we tell online support groups. When we are too tired to clean we don’t. If we are in gut wrenching pain we hide in our beds and cry in our pillows. We are not, by any stretch of the imagination, ‘High Maintenance’.
When I compare myself to the some of the behaviors that I have gone through for others ie. Rudeness, Drunkeness, Complaining, Lies, Family problems, Financial problems, Emotional problems, Marriage problems… My illness has not been discussed or intruded on anybody by comparison. Because I work my ass off not to let it.
If someone calls me or visits me I don’t bring anything up unless they genuinely want to know. Then I only put on my bravest face and skip over LOTS of details and emotional pain. I ‘gloss it up’ and down play EVERYTHING.
If ever I tell someone the smallest flash of reality I can count the seconds before they reply “Well… I better go I need to do (insert something)” or “Well you should tell your doctor!” …(As if I haven’t! At least a hundred times!) or, my personal favourite is,… “Well you just hang in there! Don’t you give up!” …(As if we haven’t been doing just that for many years already!) and probably the most heart breaking response is, “Well we all have our problems. You need to toughen up and get on with it!”. That a sure sign and a red flag that person has NO CLUE what they are talking about, they have no idea WHO I am and what I do, they don’t have the slightest bit of compassion and its a sign they will be cut out of my circle of contacts.
We have to be so careful with what we say and to whom. We are judged harsher than any other group of people in society; even harder than criminals and politicians.
We have to be one person to our partners and inner circle.Which means we can safely be who we are and say what we feel. This is a very rare and exclusive group.
Then we have to be one person to our doctors and health care providers ie. the good patient that does EVERYTHING they say and waits patiently in waiting rooms for hours.
Then we have to be another person, the fake person, to those uncaring people who just want us to smile and listen to whatever they want to say and nod. I just smile and stare at those people until I can politely say goodbye.
And then recently I added another person. A blogging person. A person that believes we are worth more than that. A person that hopes by raising awareness and telling the world what they should know, regardless of the backlash, it will lead to people knowing more, appreciating more and being kinder to those who fight battles most people will never know; and we fight them for the rest of our lives. I hope that this blogging person is doing her little bit to make that possible.