Explaining Invisibility with the
Coming to terms with invisible illness is difficult. Does it get easier after diagnosis? NO. You may assume that I have come to terms with the challenges that come with it daily. The truth is I have not. If I existed in this world alone, and had no family, relationship, academic, professional or social ties it will be easier but that’s not the case. No one exist in isolation, I have people in my life that I interact with daily and it is tough to explain to them because people do not understand or accept what they cannot see. Also the symptoms are unpredictable, no two days are the same makes it difficult for people in your life to know how to treat you. For instance, the symptoms of Fibromyalgia make me very sensitive to touch some days I can hug you on the days I have a flare up I do not want to be touched.
In the past 4 years, I have searched for the best ways to manage my symptoms I will try my best to discuss the strategies I believe will make it easier for those in my life to understand what I am going through, and how best they can help me if the need arises. I realise that they are as confused as I am and it will be easier for everyone if they understood the terms , apps and devices I use to manage my symptoms daily.
This video summarises the conversations I have had with people in the past 15 years. When it comes to my health I have come across so many people that ask questions and when I attempt to answer they are quick say it’s ‘Too Much Information’ others don’t even care to listen to your response but hear what they choose to hear. Others proffer solutions that they believe worked for others and my favourite is but you do not look sick. I have had to learn self-control and choose not to respond and in some cases I just smile. A smile that mask a million responses. Last week, a woman asked “don’t you think taking cabs is too expensive why not take the bus or train, my answer was silence followed by a smile. I was tempted to defend/explain who I choose this mode of transport. I smiled politely and said “enjoy the rest of your day”. This incident remind me of the times I have been accused of pretending to be sick to get attention, my response in the past has been to defend myself and explain how tired I was, or how I had a brain fog and just forgot to click send. How can I explain what I do not understand? How can I defend what an average person is unaware of? Prior to my diagnosis in 2013, I had no idea invisible illnesses existed, and 2 years down the line I am forced to ask myself getting diagnosed with invisibility restored my heat? The answer I am afraid is NO. This is how my day looks.
What is the Spoon theory?
The spoon theory is an analogy used by some disabled people and people with chronic illness to describe their everyday living experience when their disability or illness results in a reduced amount of energy available for productive tasks. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity “costs” a certain number of spoons, which will only slowly be replaced as the person “recharges” through rest or other activities that do not require (or even refill) spoons. A person who runs out of spoons loses the ability to do anything other than rest. One of the tenets of the spoon theory is that people with disabilities or chronic illness must plan their daily activities to conserve their “spoons,” while healthy, able-bodied, and/or neurotypical people have a “never-ending supply of spoons” and thus have never needed to worry about running out. Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy that chronically ill or disabled people may have to get through the day.
The spoon theory offers a simpler way to explain invisible illnesses. I have had people say to me, but you don’t look or sound sick and I struggle to express how I really feel so I just smile and say thank you. Aches and pains cannot be explained , there are times, people suffering from invisible illnesses myself included wish we had the big C or were a bit more physically challenged so you do not have to explain why your symptoms are regarded as a disability . It’s hard answering questions that I have no answers t. I know some of these questions come from an honest place and sometimes it is just out of curiosity. People do not accept what they cannot understand.
I came across the spoon theory and it was the struggle of someone who like me suffers in silence, someone who was going down the same path. Christine Miserandino struggles with Lupus and other illnesses that come along with the spoon theory when she had to explain to close friends what it means to be sick. The truth is unlike healthy people, I have to make plans for every hour or I pay the price. One misstep can cost me my spoons for the week and that’s not cute at all. For every action I take daily, I must plan and make sure I have some reserved spoons in case of emergencies. I have tried my best to downsize and swallow my pride and accept help. Living in a small apartment makes life easier. For instance, some days I can get my hair done, and there are days I cannot. If I have to attend an event it takes 6 spoons or more to get my hair and makeup done, I found a solution by getting someone to do it for me (paid of course). It takes me 2 spoons to sit down and allow the professional work her magic. I understand that doing this gives me a few spoons to enjoy myself and interact with people if I make it to an event. I have not completely understood my body and the way it reacts to events and activities. I am learning daily and sometimes I do not see the signs to stop but once I do, I shut down. I always try to keep extra spoons just in case I need them. I am tempted to tell people if I decide to spend a spoon with you it simply means that you are important to me and I love and appreciate you even if you don’t see it.
The two pictures above show my spoons for 2 days .
The last video is one I found hilarious. Things never to say to someone with invisible illness. I have heard over %80 of them from people with good intentions. Its great to laugh about it …
The life of an one struggling with Chronic Illnesses is complex. We all wrestle with how much information to share and the truth is it doesn’t get better. We struggle with showing people our vulnerable sides for so many reasons. The spoon theory is a step in the right direction. It simplifies the daily life of any one living with Chronic and invisible illnesses. I wrote this post 5 months ago and I am finally putting it up I know it has 3 short videos that I believe paints a picture of what I go through daily and hope this helps you understand better. My health is more than a topic to me, it is what I have to deal with daily.