I kicked off 2017 with another speech about the importance of creating awareness about CFS and invisible illnesses (video can be found on my fb page).
When I was saying my goodbyes, a lady mentioned it must be very hard for me to be out in public because people just assume there is nothing wrong with me as I am so young and that can be hard in different situations. I said yeah it is, especially in situations like standing in a long line for too long, that can have bad consequences and jokingly she suggested I needed a sign and I laughed and said I have thought about it.
Honestly though I have thought about it because some days I feel like I am living a double life. When I am at home, or around friends and family that know about my illness I do not have to fake being okay. Those closest to me understand there are limits to my daily activities, that some days are better than others and that I cannot always keep up with them etc. But when it comes to being around people I do not know very well, or going out in public for different reasons, going to uni, I sometimes feel like I need a 'label' on my head because it is just assumed I can do things 'normally'.
I live in a society where looking fine means you are. It is not always arrogance that keeps this viewpoint going, it is mainly lack of understanding. Unless you know someone who fights an invisible battle, you yourself fights one, or you work or take care of those who do, it is often misunderstood. I was asked if I have ever had someone ask me silly questions about my illness and I said no, but I have had statements such as 'oh but you look so good' or 'everyone gets tired', which was harsh because they were trying to justify my illness.
However, what i did not mention was that I have only ever been affected by one comment made my someone who said they did not want to hear about people being tired all the time. My reply was 'chronic fatigue' is not just 'fatigue', people get so fixated on the word that they believe that is the end of the issue. However there is more to it, it is a fatigue that does not go away with 12 or more hours of sleep, it is other debilitating symptoms like muscle weakness, brain fog, muscle pain or the depression from being so isolated and having your body become your enemy and rip your life away from you. My illness is not simple, no one's is.
Words are powerful and can have many connotations and that is exactly why I try to break free from this invisible bubble through my speeches, blogs, fb posts, videos and community work, so people's mentalities change. It is hard to talk about my personal struggles with an invisible/chronic illness, but breaking the silence on such a misunderstood community is the best thing i have ever done. I have found a new strength within myself that cannot be defeated and is what keeps me going. What also keeps me going is the idea that if I can change one person's viewpoint, give someone hope, help someone, then speaking about my struggles (even when it is hard) is always going to be worth it. I want our community to be accepting of these illnesses so all those suffering have a place of comfort and support and do not feel like they have to resort to hiding in their invisible bubble.
It is time we emerge from these bubbles. We all have a story to share and I want people to listen.
When I was saying my goodbyes, a lady mentioned it must be very hard for me to be out in public because people just assume there is nothing wrong with me as I am so young and that can be hard in different situations. I said yeah it is, especially in situations like standing in a long line for too long, that can have bad consequences and jokingly she suggested I needed a sign and I laughed and said I have thought about it.
Honestly though I have thought about it because some days I feel like I am living a double life. When I am at home, or around friends and family that know about my illness I do not have to fake being okay. Those closest to me understand there are limits to my daily activities, that some days are better than others and that I cannot always keep up with them etc. But when it comes to being around people I do not know very well, or going out in public for different reasons, going to uni, I sometimes feel like I need a 'label' on my head because it is just assumed I can do things 'normally'.
I live in a society where looking fine means you are. It is not always arrogance that keeps this viewpoint going, it is mainly lack of understanding. Unless you know someone who fights an invisible battle, you yourself fights one, or you work or take care of those who do, it is often misunderstood. I was asked if I have ever had someone ask me silly questions about my illness and I said no, but I have had statements such as 'oh but you look so good' or 'everyone gets tired', which was harsh because they were trying to justify my illness.
However, what i did not mention was that I have only ever been affected by one comment made my someone who said they did not want to hear about people being tired all the time. My reply was 'chronic fatigue' is not just 'fatigue', people get so fixated on the word that they believe that is the end of the issue. However there is more to it, it is a fatigue that does not go away with 12 or more hours of sleep, it is other debilitating symptoms like muscle weakness, brain fog, muscle pain or the depression from being so isolated and having your body become your enemy and rip your life away from you. My illness is not simple, no one's is.
Words are powerful and can have many connotations and that is exactly why I try to break free from this invisible bubble through my speeches, blogs, fb posts, videos and community work, so people's mentalities change. It is hard to talk about my personal struggles with an invisible/chronic illness, but breaking the silence on such a misunderstood community is the best thing i have ever done. I have found a new strength within myself that cannot be defeated and is what keeps me going. What also keeps me going is the idea that if I can change one person's viewpoint, give someone hope, help someone, then speaking about my struggles (even when it is hard) is always going to be worth it. I want our community to be accepting of these illnesses so all those suffering have a place of comfort and support and do not feel like they have to resort to hiding in their invisible bubble.
It is time we emerge from these bubbles. We all have a story to share and I want people to listen.