In a previous post, I had talked about some of the ways having rare diseases have affected my life. One thing I did not include in that post is the affect being ill has had on my relationships. I wanted to save this topic for a post of its own. Being diagnosed with numerous rare diseases have affected my friendships, my relationship with my family, so on and so forth. Friendships that I had prior to being ill and when I was very first diagnosed, vanished. My friends at the time didn't want to be friends with someone who was sick all the time. It was an inconvenience for them, as I could no longer keep up to everything that they could and wanted to do. Invitations to outings stopped. The visits stopped. The phone calls stopped. The text messages stopped. Before I knew it, months and eventually years passed and I've hardly heard from them. It is a terrible, terrible feeling. My best friends and people I thought I could always count on, left when I needed them most.
To me, one of the worst parts of being a rare patient isn't the affects it has on my physical health, it's the social isolation that comes with being ill. It's another reminder that no one else can truly understand the way we feel. Being sick, especially with multiple rare diseases can be extremely lonely. The feeling that nobody else, specifically your friends, family, and the people around you, can truly understand what you're going through and have no idea how you feel.
Since I spend majority of my time either in the hospital, at appointments, or being too sick to do anything, there's no time, energy, or health left to be able to do everything I used to be able to do. "Little" things such as going on a lunch date, or going to the mall with an old friend are not "little" things when you're sick. They're major, daunting tasks that can truly cause worsening symptoms and even land someone in the hospital. Therefore, friendships change. Going from being able to do almost anything to not being able to do much of anything, puts a large strain on my relationships, both with my family and my friends.
However, the affect that have multiple rare diseases has had on my family, is the complete opposite. Instead of being no where to be found when I needed people most, my family has always been and still are right by my side. My immediate family and my extended families have been so supportive in my fight and I can honestly say I have no clue where I would be right now if it wasn't for their utmost loving support. From carrying me from place to place when I can hardly move my muscles, from waiting endless amount of hours at appointments, never leaving my side in the hospital, and being my advocate when I can't be my own, you name it and they're there. Of course, I push them to their limits and am not the greatest at showing my appreciation for them all the time, but they have helped me to get this far and they will help me throughout the rest of my journey.
On tomorrow's post, I will talk about social networking and support groups. I will also talk about the new formed friendships that I have formed as a result of being sick. Some people may have walked out of my life, but I believe it is so that these amazing people could walk in. So, stayed tuned for tomorrow's post about all the positive impacts these fellow fighters have had on my life and the amazing ways they have helped!!! ♥
To me, one of the worst parts of being a rare patient isn't the affects it has on my physical health, it's the social isolation that comes with being ill. It's another reminder that no one else can truly understand the way we feel. Being sick, especially with multiple rare diseases can be extremely lonely. The feeling that nobody else, specifically your friends, family, and the people around you, can truly understand what you're going through and have no idea how you feel.
Since I spend majority of my time either in the hospital, at appointments, or being too sick to do anything, there's no time, energy, or health left to be able to do everything I used to be able to do. "Little" things such as going on a lunch date, or going to the mall with an old friend are not "little" things when you're sick. They're major, daunting tasks that can truly cause worsening symptoms and even land someone in the hospital. Therefore, friendships change. Going from being able to do almost anything to not being able to do much of anything, puts a large strain on my relationships, both with my family and my friends.
However, the affect that have multiple rare diseases has had on my family, is the complete opposite. Instead of being no where to be found when I needed people most, my family has always been and still are right by my side. My immediate family and my extended families have been so supportive in my fight and I can honestly say I have no clue where I would be right now if it wasn't for their utmost loving support. From carrying me from place to place when I can hardly move my muscles, from waiting endless amount of hours at appointments, never leaving my side in the hospital, and being my advocate when I can't be my own, you name it and they're there. Of course, I push them to their limits and am not the greatest at showing my appreciation for them all the time, but they have helped me to get this far and they will help me throughout the rest of my journey.
On tomorrow's post, I will talk about social networking and support groups. I will also talk about the new formed friendships that I have formed as a result of being sick. Some people may have walked out of my life, but I believe it is so that these amazing people could walk in. So, stayed tuned for tomorrow's post about all the positive impacts these fellow fighters have had on my life and the amazing ways they have helped!!! ♥