Suffering and smiling: how to pretend you're not chronically ill

Research shows that people with postural orthostatic tachycardia syndrome have the same quality of life as kidney failure patents that are on dialysis. I don’t think a lot of people realize that it’s bad. When I was diagnosed my doctor said that it’s not a death sentence but it might feel like one. I know that I’m not going to get better. I don’t think that I truly made peace with that. It’s not a cold I am not going to wake up one day and be perfectly fine. I don’t think that my family fully understands. My life isn’t about living anymore it was about surviving. I want my life so bad. I’m doing everything I can. 15% of patients with my condition faint. I am sadly apart of that 15%. On the bad days I faint somewhere between 4-9 times a day. It’s a very isolating experience. So the doctors and the clinics everything a patient tries. Anything to get me to remotely feel better.

Behind every doctor's appointment, every IV, every test, every ER visit, every hospital stay, and every medication. Is a little girl who never thought my life would end up like this. I tried so hard to make it seem like I had everything together. Chronic illness is so isolating. When you get diagnosed with a life long illness you grieve the person you were before you got sick. You also grieve the person who you could have been if you weren’t diagnosed. Some people do not understand that I can look perfectly fine and still feel really unwell. Even when I follow my doctors orders perfectly I can still feel really sick. I think that I would do anything to make me feel normal again. Being Chronically ill just isn't fair. I wouldn't wish Postural Orhtostatic Tachycardia Syndrone on anyone. There is currently no cure for POTS. They are not even 100% sure where it comes from. I just woke up one day sick and I don't think that their will ever be a cure in my life time. Grieving the life you had before you got sick is something that I will never truly understand.

When I was first diagnosed I didn’t believe that it was real. I couldn’t be sick? I have to get better. When you hear the world incurable illness,People think the worst. The likelihood of postural orthostatic tachycardia syndrome killing me is small. I’m not sure if that was supposed to make me feel better or not. I would change every thing if I could not be so unwell. When I got diagnosed everything finally made sense. Being Chronically Ill means that I had to advocate for myself.

I took being healthy for granted. I can wake up and feel okay and then suddenly I feel like my world is spinning. I’m watching my friends live their lives and i’m stuck. I don’t know how Postural Orthostatic Tachycardia syndrome is going to affect me in 10 years time. I don’t know how it is going to affect me tomorrow. I’m not sure if really knowing how it will affect me will change how I feel. I took being healthy for granted. I can wake up and feel okay and then suddenly I feel like my world is spinning. I’m watching my friends live their lives and i’m stuck. I don’t know how Postural Orthostatic Tachycardia syndrome is going to affect me in 10 years time. I don’t know how it is going to affect me tomorrow. I’m not sure if really knowing how it will affect me will change how I feel.