All I ever wanted was approval. For someone to say “you’re doing so well…” but I never got that. In my undergraduate I worked myself to the bone I wanted to get somewhere. But in my last year I feel that I knew something was happening. My left arm became gradually weaker to the point where I was having to modify my body mechanics with it so I could do tasks.
When I graduated I was so exhausted. I figured a month or two of break would see me through that I just needed time to get r & r and that I could jump right into things.
But that never happened. I just got more and more tired. I could sleep all day and feel even more tired. People were telling me that I was probably bummed and that I just needed to knock it out. That’s when the bleeding first started. Last May. As the year went on the bleeding and GI symptoms became more and more frequent. I tried going to doctors but it was always useless.
Then there were the infections I had 4 sinus infections, two super long colds, and 2 kidney infections. They say when your stressed you are more susceptible to illness but I’ve been sick so much this year and that in combination with other things has been a lot. On top of that I’ve basically developed a chronic cough because of my heartburn.
The worst part of it is that I feel like nobody believes me anymore. My parents are in denial. I feel like no one really gets it except my best friend who took 10 years to get a diagnosis.
At this point people compare me to the old me who worked, volunteered, and did school and was doing well. To the current me who can’t even get a job in what I went to school for. The me who struggles financially and is so much slower paced.
My dad is convinced I just have anxiety. That I just have to shake it off. Get over myself and be the me he knows I can be. I want to be that girl too. But I realize that she’s in disrepair right now. She bleeds everyday, she’s in pain all night and can’t sleep, her bones ache and joints chaffe, her trembles make it hard to function most days.
I hate how people make me feel like a failure now…because in the back of my head I know that thought lurks. Maybe this is all mental. Who knows. But if it is then it needs to be resolved because it’s destroying my body. I mean stressed to the point of bleeding several times a week and getting recurrent infections would need to be resolved regardless.
The worst part of it is part of me feels abandoned by my loved ones and the health care system I devoted 5 years of schooling towards.
When I was in school my professors always stressed that “the patient is the expert in their own health”. Well I’m there now and no one thinks that I know anything. That I’m just trying to get out of things.
I know people want me to move faster with my life. I wish they could understand that I want that more than anyone but there’s something that’s clearly happening with me that needs to be resolved…
I think it just makes me sad though that people in my life think that I lost confidence, that I’m lazy, or that I have no motivations. That they tell me so. It dances along the line of frustration because these same people refuse to acknowledge that physically I’m unwell or that it isn’t something I can snap my fingers and get over.
At the end of the day though I’m most accountable to myself. Though I don’t love my current situation I know I am trying. Trying to get help. Trying to do what I can with my life so I am not stagnant.
I’m not sure how long getting a diagnosis will take. I’m not sure if I’ll ever get one but whatever is happening to me…it’s not nothing. It’s having a significant impact on my life and I’m trying to work around that. I just wish my loved ones understood that…