My Silent Voice and How I Can Make it Be Heard
There are so many people out there that can't understand how I have managed to accomplish some of the things I have over the past few years. They include members of my family and even strangers, who belong to the many online support groups I belong to. How do I do it? It's very simple really. I've learned to accept, understand, and research my disability.
My disability and how it affects me
I recently had to fill in a form explaining that because I can't work I have to have some sort of supplemental help from the powers that be. There were so many questions to answer explaining why. I was so disappointed by what was asked of me. The form was created by someone who has no clue about chronic diseases and their effects on people. It was extremely frustrating and made me quite angry.
Some of the questions were very condescending and implied that because you could do certain things, you should not be considered disabled. Just because I can go to the loo on my own, doesn't mean I don't struggle to get there. Just because I can shower without help, doesn't mean I don't have fear every time I walk into one. Not being able to breathe is so very real for me. Most chronic illnesses change from day to day and sometimes hour to hour. This includes lung disease.
My invisible struggle
The form made me think about my mobility issues and all those nagging invisible things I deal with every day. When I wake up in the morning the first thing I think about is how I'll get down the stairs without stopping and will today be the day I need to stop before I reach the bottom.
I prepare for the day hoping my breathing will maintain for what needs to be done. I plan ahead so I can consolidate all my chores and work my way through all of them without too much stress. All the planning, thinking, consolidating helps me to get through everything with a little extra to spare.
How do we get people to understand COPD?
This is something very close to my heart and I feel very passionate about it. Most chronic diseases get plenty of viable exposure. Social media is one of the most effective ways to make people understand how they affect sufferers. But ironically, COPD is never really on the radar and rarely gets any sort of exposure. I find this incredibly disheartening considering how many sufferers there are. So many people have the disease and don't know they have it.
Social media and its power
Having a platform like social media is so important for us so we can educate people on this fairly taboo issue. Having a chronic illness should never be a stigma, it should be given the respect it deserves. We need to get the message out about how easily any kind of chronic disease can creep upon us.
No one is invincible
We are all fragile parts of the universe. We need to learn to respect our infallibility and share ourselves with other people. Only then can we be more compassionate and have a greater understanding of how fragile our lives really are.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?