Its funny that ever since I became chronically ill, autoimmune and in a wheelchair there is an unwritten rule that people in situations such as this are not allowed to show emotion. Why? I honestly don’t know!! Although most of us are generally in constant pain (more pain than most human beings will ever know) society and maybe ourselves, to a certain extent, require that we are emotionless and almost ‘unseen’.
Its almost as if in order to be acceptable we must forgo any emotions and remain unemotional and try as much as we can to ‘fit it’ with the rest of society. In fact. Even though we are physically incapable, in many cases, the more we fit in or be able bodied and healthy world the more we will gain favour ie “He still runs marathons even though he can barely walk…” or “She will still hold down a full time job and bring in money even though she can barely move and falls over etc…” What about those who can not? Are they not wanted? Are they not worthy? Is that the yardstick we measure people with? Why do we have to be more able bodied or achieve more than most healthier people do in order to be worthy of love and respect?? Why?!
This is a difficult topic and one I am very passionate about, especially when I look around me and see people free to cry about lost tickets, movies, cancelled trains, missed shoe sales and the list goes on… Even though I have lost many different and very real things in the past eight years (vision, strength, driving, walking, toileting, eating etc) I am not allowed to cry or morn them in public or else risk public embarrassment or further rejection. I cant even talk about these topics to many of my friends and family! They don’t want to be confronted with it.
So I cry at home, in private, in the shower, in the car, to my husband… and sometimes, if I have had a particularly difficult time and can not hold it back or open my mouth without tears falling out, I cry to my doctor. I run a very real risk if I DO cry in front of others and my doctor that they will immediately jump on the most awful of judgements that you can possibly force upon any chronically ill, disabled or autoimmune person… its so unspeakably unfair and horrible that I hate even writing it… it’s the “MAYBE YOU’RE JUST DEPRESSED AND NEED SOME MEDICATION” old band wagon. It leaves me speechless and completely isolated at the same time!
Of course we ALL go through periods of depression; its normal for healthy people too! Dont get me wrong here, there are mental illnesses that can be helped by anti depressants and I have friends and family that have benefited through the help of anti depressants. This is not a comment about depression or medications for clinical depression. This post is about how unacceptable we feel and invalidated we feel when, after suffering so many painful, embarrassing, inconveniencing, frightening, challenging, painstaking, life changing events we are expected to take them in our stride and to not draw attention to ourselves by showing emotions or having emotional reactions to our situations! Its almost the most cruelest of insults imaginable! We form secret societies and we meet out of public view to share our pain and frustrations so the rest of the world will be ‘spared’ from baring witness to it. Although the rest of the world seems perfectly happy to bare witness to many events on T.V. and many other forms of loss and suffering… but our particular brand the world would rather deny and look away.
And why does this happen? Why do people want us to remain quiet and suffer in silence? Because it makes THEM uncomfortable and it makes them have to face the realities of going through something so hard, so challenging, so difficult, so long term, so unimaginable, so scary, so dehumanizing that they would rather not have to confront it with you. Often the risk of seeing you cry, struggle, at your worst is so difficult that it drives many friends and family away, just when you need their encouragement and assurance the most! Its a catch 22.
The media is also an enemy, with their portrayals of the chronically ill, disabled, autoimmune (to be honest I don’t know ANY portrayals of people with serious autoimmune diseases!) show, at best, these two dimensional characters who are either stoic characters and want people to ‘ignore’ their disabilities so they can be like everyone else. Or they are the wounded souls whom the healthy characters must awaken out of their self indulgent angst and inspire to be more ‘adjusted’ and presentable to society. Lovely scenarios aren’t they!! NOT!
The truth is my sadness and reactive depression will run in cycles. Yes cycles. When I am in the middle of a bad flare and everything aches or doesn’t work, I feel so sad and frustrated that I cry! When I feel like I have been pushed out of the hearts and mind of the world, I cry! When I feel like a burden to my husband (whom I adore) I cry! When I think about the life I would have liked to be having / living instead, I cry! When I think of all the other people who suffer as much or even more than me, I cry! To me its as natural and as human as smiling, laughing, loving, and worrying. But somehow I feel as though I am not allowed this luxury before someone starts waving anti depressants at me or starts turning their backs on me and starts thinking “It was all in her head all along, its just a bit of attention seeking afterall!”. ARGH! It is for these reasons that I must keep my cycle a secret, I must keep to myself and hide from the world. However, I personally think that is terribly, completely and insultingly unfair.
I remember many conversations with people who had turned to me at times when they had lost their jobs, broken up with their relationships, been homesick, felt let down, stuffed up interview, was late for a meeting and I was the empathic shoulder and validated their feelings. So I find myself asking why? After all these years, thousands of challenges, hundreds of heartbreaks, innumerable drugs and tests and life changing losses, two misdiagnosis, and eight years of fighting an invisible battle, WHY aren’t I allowed to cry?
Sometimes we can say more with tears than we can with words.