Sunday, March 18, 2018

Our Invisible Scars: Mindy's Story

I once wrote a piece on my old blog about invisible scars and the validity of fighting battles that no one else can see.

And at the time, I was battling my eating disorder and referring to the emotional scars from my divorce.

Since then, I've been trying to figure out this new me, this person who has invisible scars that don't really make sense to anyone else. I've tried loving this anxious, paranoid person that I've become because she is still me and often times, she is the most prominent part of me.

And it's been hard. 

Loving this part of me is not easy at all. 
I get really impatient with my anxiety and I often feel stupid for feeling the way that I do. It takes a lot for me to be able to step back and validate my anxious feelings instead of dismissing them or shaming them.

Because in reality, there is usually a reason I can come back to that validates the way that I'm feeling.

For example, I have pretty irrational anxiety when it comes to losing people I love. And sometimes I'm really impatient with myself about this. Because spending time worrying about whether my kids are safe at school or whether someone I love will leave me does not actually stop bad things from happening.
And sometimes it's hard for me to validate the fact that my husband left me because I don't want to 'just be the victim' but in reality, those choices have left some pretty intense scars on my heart.
So it makes sense why I struggle with separation anxiety.

Living with these things has really caused a lot of speculation about life and what the people around me are going through.

When I 'people watch', I wonder what has made that particular person who they are. I wonder what they've been through and how they're doing right now.
I imagine their invisible scars---the really tough things that they've lived through---and I wonder if they still feel those scars or if they have been able to move past the most heart-wrenching parts of their lives.

I wonder who has anxiety, who is depressed, and who is feeling self-conscious that day. I wonder how many of their stories involved thoughts of suicide or other self-hate/self-harm.

And although it isn't any of my business what their deeply personal stories are, I do this to remember that everyone has fought battles and everyone has reasons for why they are passionate about certain things or why they are in a negative mood or why they seem so tired today.

I don't believe people are just mean or angry because they thought that'd be a fun mood to try out for the day.
I believe there are reasons. 
In fact, I've been hurt on more than one occasion by people who had promised to love me and although my pain was and is real, they had reasons. There is more to the story than just a, "He left me because he's a jerk and now we're divorced."

People have stories and reasons for their choices. 

And whether their choices are right or wrong, I believe that most people, in the situations they have found themselves in, have tried to do the best they can with what they know.

I don't think it is our job to condemn others for all the ways they are failing.

I believe it is our job to build them up when the world tries to depict them as a failure. 

Sure, we need a judicial system and boundaries and protection. But that is not the level I'm picturing right now.

I'm talking about our coworkers, our friends---even our family members. 

Isn't it so easy to find the flaws in other people? When they mess up at work or they didn't put away their dishes or they bowed out on a girls night---our first thought is often annoyance and we often sneak some judgement in there too.

But sometimes, the people we love are fighting invisible battles too and when we point out their mistakes, all it does is show them that their heart is not safe with us. And so maybe they stay quiet when they would've spoken up.

Last year, I had to do a project in one of my classes that involved interviewing a woman who either worked in the healthcare industry or had a diagnosis that caused them to need a higher number of doctor appointments.

I chose to use my friend, Mindy, who has Multiple Sclerosis.

Mindy was one of my closest friends in high school. She always understood me and had my back, when I often believed that the world had turned against me. She almost always had a huge smile on her face and I have never seen her treat another person unkindly.

In high school, Mindy had some health problems but nothing major. She just seemed to get sick easier than most kids do and I remember her complaining of headaches and other pains sometimes. The thing is, this was my perspective---things I actually remember from high school---which means, it was probably much worse than what I had heard or witnessed.

Mindy is now married with two young children. And a few years ago, she was diagnosed with Multiple Sclerosis after a portion of her body went numb and she pushed doctors to do further testing. And since that diagnosis, I have seen a completely different side of my friend.

I have seen someone who is brave enough to talk about their bad days so that other people know they are not alone. I have seen a mother do everything she is able to for her children while also showing that needing help is not a sign of weakness. I have seen her {still} smiling in pictures more often than not. And I have learned more awareness for those struggling with MS.

Mindy has invisible scars. Her body doesn't always work the way she wants it to. It doesn't take more will power or trying harder or praying more.

And when I think about Mindy's situation, about the pain she is probably in each time I see her (although her face shows a huge smile), I try and remind myself that there are so many people I interact with whose stories I do not know.

So while I've asked for your patience personally in the past, I'm asking for your patience with everyone else in your life.

Because stating I have anxiety out loud might bring about some awareness but I can't change the way you view or treat other people. And I think if you knew their stories, you'd probably react differently toward them.


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If you'd like to read the essay portion of my project to learn a little more about MS and Mindy's struggles, keep on reading!

Mindy Hermann is a 29-year-old female, married to her husband, Mike, and mother to her two young children. She was diagnosed with Multiple Sclerosis in June of 2017 at the age of 27. Mindy had gone to the hospital with right eye pain and had been diagnosed with inflammation in her optic nerve. At this time, she was referred to an ophthalmologist, who she was able to see the very next morning. This ophthalmologist confirmed she had optic neuritis and got her in to see a neurologist that afternoon. The neurologist she saw was not familiar with pain when it comes to Multiple Sclerosis and ordered an MRI but Mindy’s insurance did not cover this procedure so she did without it. Exactly one month after this experience, Mindy began to go numb from her rib to her knee on the left side of her body. Days later, she found herself back in the emergency room, this time begging for them to give her an MRI because she suspected it was Multiple Sclerosis. Doctors gave her the MRI and her diagnosis was confirmed.
             Mindy’s struggles are far from over and as she described in her interview, the symptoms of her Multiple Sclerosis have escalated throughout the past two years. Currently, Mindy deals with trigeminal neuralgia, foot drop, Multiple Sclerosis hugs, and optic neuritis. She has been numb from her chest to her toes since the month she was diagnosed, back in June of 2015. She also states that her struggles include depression and anxiety, two effects that coincide with an article I read while preparing for this essay, entitled Depressive and Anxiety Symptomatology amongst Multiple Sclerosis Young Women: The Occupational Therapy’s Perspective. This study, which was done in Greece at the Association of Multiple Sclerosis, found that 25% of the women experienced depressive symptoms and that 14%-41% were experiencing anxiety symptoms. (Ioanna, Margarita & George 2015) Living with Multiple Sclerosis is especially difficult on Mindy, as she is raising her 2-year-old son and 4-year-old daughter. Mindy stays home with her children and often feels guilty because she cannot do some of the seemingly normal things like taking her children to the park or walking them around at the local zoo. Because of these struggles, Mindy is extremely lucky to have a pretty strong support group. Her husband, Mike, and her mother are her biggest supporters and help her with the things she needs. When she gets transfusions, her mother has sat with her for hours and played games with her. Aside from the people who can physically be there for her, Mindy has also found support in an online Multiple Sclerosis community and feels comfortable asking them questions and being able to vent when she is having her low days. Mindy also talks about the support her friends have been. Although it might seem like a small way to support someone, Mindy has said that when she posts articles on social media and finds out her friends have read and/or shared them, she feels a deep sense of support from them and appreciates that the people in her life are trying to be more aware of the effects of Multiple Sclerosis.
            The obstacles that Mindy has faced in the past two years have been very difficult for her. This started with her first doctor who did not want to do an MRI. Mindy had to push to get an MRI at the hospital because she knew this was serious and wanted to get answers. This same neurologist had put her on 50mg of steroids before leaving town for two weeks, leaving Mindy to continue the steroids for a month. This was not good for Mindy’s health and when the neurologist returned from vacation and she was able to see him again, he let her know he does not treat patients with Multiple Sclerosis. Although this would be absolutely frustrating for anyone to experience, it isn’t all that uncommon. In an article entitled Access to Preventive Health Care in Severely Disabled Women with Multiple Sclerosis, we can learn that healthcare access for women with Multiple Sclerosis is not always easy due to these particular patients experiencing impaired mobility, cognitive difficulties, and mood disorders. (Dobos, Healy, and Houtchens 2015) These sometimes-difficult symptoms to treat can negatively impact the type of care women with Multiple Sclerosis receive and also make it so that particular doctors will not treat them, as we’ve seen firsthand in Mindy’s case.
            Mindy has also had to face obstacles directly related to her treatment for Multiple Sclerosis. She started on a medication called Tecfidera, a pill she takes twice a day which causes severe flushing. When Mindy described this, she said to imagine a horrible sunburn feeling all over her skin that lasts for an hour every single day. She also states that all of her spinal lesions have progressed. Because of this, she started on Tysabri, which is a monthly infusion through an IV. This causes her body to feel awful for 3-4 days after each infusion and more specifically, causes fatigue, nausea, and body aches.
            When Mindy was asked whether she feels her diagnosis has caused others to perceive her differently, she states that, yes, she feels she is perceived differently now. When she was first diagnosed, Mindy had a 2-year-old and a 6-month-old and felt that everyone was looking at her with pity. After some time, she has realized that each of the people who reaches out to help are doing so because they care about her and truly want to help her family. This has helped her to recognize how people perceiving her differently doesn’t have to be labeled as a negative thing. Mindy is different since her diagnosis and that is merely a fact.
            When asked whether Mindy felt her care was ever affected by her race/ethnicity/gender/income/status/age, she simply answered no. While this answer was very positive, it is not always the norm for people in Mindy’s situation. Judith Lorber and Lisa Jean Moore state that women with disabilities are less likely to find a life-long partner than their male counterparts. This has to do with the fact that women are expected to be caretakers and when they may not be able to do this, it goes against the gender norm of what men expect and want when looking for a partner. (Lorber & Moore 2002)
            In Mindy’s ideal world, she states that there would be a clinic specifically for Multiple Sclerosis patients, where a higher knowledge of Multiple Sclerosis and treatments would be available to patients. Mindy started having symptoms of Multiple Sclerosis in high school and started with an ultrasound and x-ray of her chest, which brought no conclusions. She also got a CT scan to try and find an answer to her headaches, which again, brought no conclusions. If Mindy had been able to find someone who knew enough about Multiple Sclerosis and order an MRI when she was younger, she would have been able to start her treatments in the beginning stages of her Multiple Sclerosis. Another point that Mindy brought up was regarding the medical bills involved with Multiple Sclerosis. Although Mindy is on an insurance that fully covers her medications, she states that many patients in her same situation can be expected to pay up to $7,000 per month on the medications they need to treat their Multiple Sclerosis.
            While interviewing Mindy, I found myself wanting to become more aware of the things going on around me. I have known Mindy for over 12 years and remember her having symptoms in high school that no one seemed to be able to figure out. The healthcare system is advancing and with that, I have hope that we will be able to change situations like Mindy’s to hopefully treat these types of diagnoses better.

References:
Dobos, K., Healy, B., & Houtchens, M. (2015). Access to Preventive Health Care in Severely
Disabled Women with Multiple Sclerosis. International Journal of MS Care, 17(4), 200-205. doi:10.7224/1537-2073.2013-046
Ioanna, T., Margarita, A., & George, Z. (2015). Depressive and Anxiety Symptomatology
amongst Multiple Sclerosis Young Women: The Occupational Therapy's Perspective. Health Science Journal, 9(3), 1-5.

Lorber, J., & Moore, L. J. (2002). Gender and the social construction of illness. Walnut Creek: AltaMira.