Meet Samanta: She has 12 Diagnoses that You Can’t See

Meet Samanta. She’s been fighting an incredible amount of symptoms since early 2012. She’s currently diagnosed with Celiac Disease, Ulcerative Colitis, Gastritis, Autonomic Neuropathy, Peripheral Neuropathy and Postural Orthostatic Tachycardia Syndrome, Orthostatic Hypotension, Overactive Bladder, Gastroparesis, IBS, chronic migraines, Fibromyalgia.

She undergoes plasma exchange in order to not be left completely debilitated. When she’s not in a wheelchair and her port isn’t showing she looks fine.

This is her #InvisibleFight.a

shutterstock_53185108Without regular treatment she’s left in a wheelchair. When she stands her heart rate skyrockets and she struggles to breathe. She says, “I have to lay down immediately when I’m standing up it’s like my body’s running a marathon. After more regular treatments I could go upstairs and I didn’t have to ask for so much, I hate feeling annoying. I need help and I can’t help it, it’s frustrating not to be able to do stuff for yourself.”

“I’m 23 and I take more medications than people’s grandparents. I have a shower chair. People really only talk to me about my health problems when my port is visible or ask, “why are you sitting” when I need a rest. “I’m lucky that my parents are supportive. I know other chronic illness patients who are told, ‘why don’t you get a job? Why don’t you get off the couch?’”

“It has a severe impact on my life and it impacts my whole family and boyfriend. They have to think, ‘Can she move? Will she have somewhere she can sit? We may have to go home early.’ I can’t even roll myself around because it raises my heart rate so I need somebody to push me. I haven’t gotten an electro chair yet. “

“It takes a lot of work on behalf of my family. I’m getting carried up the stairs. I’m sleeping in my living room because I can’t get to my room on the second story. It was my boyfriend’s birthday and we wanted to go to dinner but I have food restrictions and where I can go? I had to ask him, ‘Can you bring clothes from my closet so I can decide what to wear?’ It’s a lot of work for everyone else.
I have issues eating, my brain can’t tell my body to digest properly. Everything’s out of control, I’m managing one meal a day or liquids or soft foods. Basically I’m ok as long as I don’t eat or move.”

“I have ulcerative colitis and celiac disease, but at home we all eat the same things so I don’t feel out of place. People say, ‘oh I feel so bad for you’ but I have better food than you do! My dad will find a way to make anything; we just had dairy free, gluten free, bacon chicken Parmesan.”

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I have an accessible parking pass. My boyfriend will take me somewhere in a nice car and park in a handicapped parking spot. We’re two young people… he gets a lot of dirty stares.”
“A few weeks ago someone started questioning me and asked “Who’s using this[handicapped parking]? You look fine”, My dad pointed to me and I showed them my port. A random stranger walked all the way over to tell me that.

On the flip side there are a lot of people who are very helpful and accommodating but it’s frustrating because if I didn’t have a port no one would take me seriously, they think ‘young people don’t get sick’ , but there are hospitals specifically for children.”

“Unless you look sick people are kind of ridiculous… and what does it even mean to look sick? because somethings wrong with the inside of my body, not the outside.”

Once I left my wheelchair to use the bathroom when the handicapped stall was being used, and I got questioned, “Why do you need a wheelchair? You’re not paralyzed.”
“But I have people who are really nice. I went to the movies and tried to walk and I had to sit down random places so I could breath and the staff was asking me ‘Are you ok? Do you need water? Should we call somebody?'”
It doesn’t bother me to have people asking if I’m ok or need help if they’re legitimately concerned. It bothers me if it’s someone I know and they stop treating me as person. I’m not just a sick person. Or if they ask not because they care but because they’re nosy. I’m happy to explain because before I got sick I didn’t know much about chronic disease etc. Even though I do understand where they’re coming from it’s complicated, I’m sick and I need help but I’m still me …but some people can’t see it that way. It’s like when you’re sick you don’t have any personality, you’re solely just a sick person. I’m happy to talk about it but I don’t want it to be the only thing we talk about it.

 

Or they treat me like I’m made of glass, and I make a lot of jokes about it and people get uncomfortable but if this is how my life is going to be I’m going to deal with it. I was depressed to be in a wheelchair but I’ll adjust, it’s going to be different, it’s going to be harder but it doesn’t all have to be on society’s timetable, it can be slowly. My family is there for me and I have a roof over my head so I do have everything I need. and I’m lucky I have access to health care vs a rural 3rd world country ..I wouldn’t be here. When you think about somebody who can’t get to a doctor and medication I’m luckier than a lot of people. It’s not easy but I do have it better than a lot of people, I have a full support system.

I realize this is how my life going to be I could be really miserable about it or figure out how to make what I want happen. It’s ok to be sad about being sick, it’s not easy, it’s not want you wanted but just wake up the next morning and try again. Other people have issue, the loss of a loved one, divorce, but you have to move on with life because things happen all the time. You just need to push through, like with my treatments, I’m very frustrated but I can’t just sit here. I’m writing letters, I need to do something about it. There are somethings I can’t change but I can still try to change other aspects that’ll make it easier. It’s a lot of work to be sick and it’s exhausting but I feel like I need to do something.

Before I was sick I always wanted to make a difference, even now that I’m sick I can still do it. I talk about it because I want to help people, in some sort of way. I can’t be a teacher, with how schools are during flu season, but I can share my story and try to break down the stigma of being sick a lot of people don’t have the support and don’t know what to do and society says you have to be strong but you can be upset, it’s a roller coaster, and you probably won’t get better and it’s ok to be frustrated by that. I’ve had people message me, they’re glad that I’m straightforward on my twitter account. If I’m miserable I’ll say it, it’s part of life..you don’t always need to be happy.

 

Editor’s Note:Keep an eye out for more of Sam’s story. You’ll get to read more about when first got sick, how she got diagnosed, how her appointments to receive treatment were recently canceled. Her lack of treatments have left her debilitated, back in her wheelchair. You’ll also get a glimpse at the amount of people she’s helped by sharing her experiences. Follow her on twitter at @pillsandpebbles and check out her blog here.

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