The Dark Side of Chronic Illness

***TW/CW: discussion of mental health, suicidal ideation, suicide, and use of cr*pple slur***

Recently I made a post about my feelings behind language like, “you’re so brave” being used in regards to my disability. I wrote about how I don’t see living as a disabled person as an act of bravery, and I do not feel like I am “brave” for handling my chronic illnesses. That conversation cannot be had without talking about the times when people cannot cope with being chronically ill.

Many people who are chronically ill have to deal with both physical illnesses and mental illnesses. Sometimes there is no correlation, and other times the experience of having physical disabilities can spark mental illness. On the contrary mental illnesses can also spark physical illnesses; even though they are sometimes psychosomatic, the feeling of pain can be just as distressing as pain that stems from physical illness.

Chronic illness often leads to isolation, which is a hard enough thing to deal with on its own without being sick. Being in constant pain is also emotionally and psychologically taxing. I’ve personally had periods of time where the inevitability of death was comforting instead of terrifying. I begged God to kill me on more than one occasion, and those kinds of thoughts are not easy to get over. There have been days where I felt as if I couldn’t handle everything and it was all too much. Fortunately, I’ve been able to swallow those thoughts/feelings and haven’t attempted suicide, even when I really wanted to and it seemed like the best option. This doesn’t make me stronger than anyone who has self-harmed or attempted suicide, but I feel privileged that my suicidal ideation did not lead me to actually attempt suicide.

In November of 2017, the creator of the Cripple Punk Movement, Tai, committed suicide. I did not know them personally, but I followed them on social media as well as their friends, who are also prevalent in the disabled community. Their loss is one that really shook me to my core, even though I had no personal connection to them. Tai had fibromyalgia and had dealt with an eating disorder as well as PTSD. They are just one of many chronically ill people who suffered with suicidal thoughts, and debilitating illnesses. Due to the fact that I did not know them, I do not want to make any assumptions surrounding their life or death, however I do think a conversation about chronic pain should come out of this terrible and heartbreaking situation.

Tai was an avid disability activist, which is why they created the Cripple Punk movement in the first place. The Cripple Punk Movement aimed to “reject pity, inspiration porn, and all other forms of ableism and fully support those who struggle with it.” I found liberation and felt supported due to this movement. Their idea’s are incredibly inspiring to me, and I aim to be as strong and care-free as they were. I hope I can use my voice for good and advocate for my communities like Tai did. Staying positive is important, but we so desperately have to recognize the “dark” and horrible parts of being chronically ill.

Suicide is an epidemic within the disabled community. I believe this is due to inadequate care, and an ableist society. Chronic pain, specifically, goes beyond the physical components. Doctors need to recognize how psychologically taxing it is to have chronic pain, while also not belittling us and telling us “it’s all in our heads.” We need support groups and connections with other disabled people. We need representation in the media, and in our daily lives. We need to be seen, but most importantly we need to be heard.

 

 

People had been asking if they could do anything for Tai’s family, and so if you feel inclined, Tai’s family has asked that people donate to The Loft (an LGBT community services center) in their name.

If you’re hurting or struggling please call 1-800-273-8255. You can also chat online with someone if that would make you more comfortable

 

 

 

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You’re So Brave

Everyone goes through crappy situations that they can’t control. Some people have had to deal with abuse, others parents getting divorced, and if you’re like me you’ve spent a decent portion of your life being chronically ill. People often tell me, “wow I could never do that”  in reference to my health problems. Honestly, six years ago I would have said the same thing.

I am not brave, nor a “warrior” because I am chronically ill. It’s a bad situation that cannot be fixed. How do I deal with it? I just do. There is no alternative, my only option is to deal with it. I do not feel like I need praise for simply living the life I was given. Humans can handle much more than we think we can. There are a lot of situations that I feel as if I could not handle, yet I know logically, if I was put into them I could make it through. (I also want to mention that some people cannot handle being chronically ill, and it truly is an issue in our community but I’m going to talk about that in another post)

Life isn’t easy a lot of the time, and chronic illness forces you to do a lot of persevering. Living my life as a disabled person does not make me brave, in and of itself. When people say this to me, I hear the under tone of, “You’re life seems so hard, I wouldn’t want to do it.” Sure, some aspects of my life are difficult and sad and sometimes even heartbreaking, but there are so many joyous and positive experiences to be had. Being able to live as a disabled person is a blessing in many ways, and has taught me so much about life and the human experience. I am not brave simply because I am disabled, I am brave because I dare to live a fulfilling life as a disabled person, when society tells me that is impossible.

No I Don’t Care That You Know Other Queer People

“By the way my coworker’s best friend’s sister is gay.”

“… oh, um that’s cool.”

This is a conversation that takes place constantly. If someone knows I’m gay, they always love to tell me when they meet other queer people; as if we’re unicorns. Don’t get me wrong, there are nothing but good intentions behind it, it’s just a little weird. Would you tell me if you met another woman, or some else who had blue eyes? Probably not.

This is different from the typical, “oh you’re gay, do you know my friend Sam, he’s gay too?” situation. People don’t think you know them, they just want to let you know they know other queer people. My older sister is the main culprit of this in my life. She lives in a major city, so of course she knows/is friends with/ runs into a lot of queer people, and she lets me know. Every. Single. Time. Maybe I’m a huge jerk for not caring, but honestly it’s just not that interesting to me. I consume a lot of queer media, so I constantly see other LGBTQIA+ people. Plus, I’m in college, so I see a decent amount of visibly queer people in my day to day life.

Being able to see visibly queer people is so so important, and I do get excited when I see other people people just living their normal lives. I feel a sense of familiarity and kinship with other people in the LGBTQIA+ community. Someone telling me about how their barista is gay though, isn’t really something I care to know. What is the correct response to “Oh! I was meaning to tell you my waiter the other day is gay.” ? Do you want me to jump up and down and beg you for more details? I usually go with, “that’s cool” or “oh wow” which both come out sounding incredibly unenthusiastic, no matter how much I try and pretend to care.

I never confront anyone about this, because I know they are just trying to be nice. It in no way makes me mad, or even annoyed, I just find it incredibly odd and kinda funny. Does this happen to you? If so, how do you respond? I feel like this definitely isn’t just something I deal with!

 

It’s Been a Minute: Life Update

It’s been a little while since I talked about what’s going on in my life, so I thought I would catch you all up!

First, I got the results back from my endoscopy and they were inconclusive. I had elevated mast cells in my biopsies, but they weren’t nearly high enough to diagnose mastocytosis. I had a serum tryptase test done to see if I had any elevated levels there, and it came back normal. It looks like I probably don’t have systemic mastocytosis, but my gastroenterologist is referring me to a new allergist/immunologist, who I have an appointment with on the 16th. Having negative results for tests is a good thing, because you don’t want anything to be wrong with your body, but it is also incredibly discouraging when it was the only new idea a doctor had in a long time. Since, I looks like I don’t have any mast cell issues, the gastroenterologist diagnosed me with post-infectious IBS.

I continued to have trouble with exhaustion due to my IST, so the electrophysiologist upped by digoxin dose. It had been working really well, but the past couple of days I’ve been exhausted and have felt my heart racing. It’s hard to know if the medication is no longer working or if I’m just having a rough few days.  I have an appointment on the 22nd with him, so we’ll see what he says. The gastroenterologist put me on Linzess for my IBS, and it hasn’t worked. It’s supposed to help with chronic constipation, but instead it’s making me have no bowel movement for two to three days, and then diarrhea. I stopped taking it, and became incredibly constipated immediately. Luckily, I see him on the 8th so hopefully he has some ideas on how we can get my digestion under control.

With school starting back on the 16th, and three doctors appointments in January, this is going to be a pretty busy month for me. I’m also starting to volunteer at a nursing home this Friday, which I am excited about. I feel ready to go back to school, mainly because I’ve been bored. I really hate feeling unproductive, but having the time to relax is nice, and something I try to take advantage of. I hope you all are doing well, and enjoying the new year so far!

Goals for 2018

Last year I made some goals for 2017, and I thought I would do it again this year! I have gone back to that post many times though out this year, and it has motivated me to continue to keep on track with my goals. Here are five goals I have for 2018:

  1. Keep My Grades Up

This past semester was my first semester in college, and I’ve been working incredibly hard. Luckily, that hard work has payed off and I finished the semester strong. My goal for the spring semester is to maintain my GPA. Being able to do well in school, after having so much trouble with school due to my health for the past five-ish years feels amazing. I’m definitely an overachiever and so getting good grades feels incredibly rewarding!

2. Transfer Colleges

I’m currently living at home and going to community college, but I’m hoping to transfer to a University in the Fall 2018 semester. This goal kinda ties in with goal #1. I need to get good grades and work on my application in order to get into my dream school. I have good back-up options, since the University I want to go to is pretty hard to get into (my older sister was rejected), but I’m hoping my grades will be good enough for me to get accepted!

3. Get my Pharmacy Tech License

Currently I’m planning on going into the medical field, and I want to obtain a Pharmacy Tech license in order to get some experience in the field. I also think this will look good on my college applications. I’ve never had a job (due to my age and health), so I think it’d be super rewarding if I was able to get my license while working. I’m hoping to do on the job training at a local pharmacy that lets you work while you train.

4. Be more involved in my community

I think activism and volunteering are so so important, especially right now. I’m applying to volunteer for a political  campaign, and to volunteer at my local hospital. Between both of these things, and opportunities at church, I’m hoping to be more involved in my community.

5. Continue Blogging!

I’ve been blogging for a year now, and I can’t wait to blog more. It’s been difficult to keep up the blogging with school, but I’ve still been able to post some. I’m going to try and make time to read more of the blogs I follow on a regular basis, and post more.

 

What are your goals for 2018? What do you hope happens for you in 2018? I hope everyone is enjoying celebrating the Holidays, and reflecting on the past year!

Lots of Love,

Alyssa

 

Books I Read in 2017

Reading was always one of my favorite things to do as a child. My mom is an avid reader, and when I was little I always wanted to be able to read as much and as fast as she did. When I started getting migraines, I stopped reading for fun because it was no longer fun. I’ve been very fortunate to have a relatively small number of migraines this year, and I was able to get back to reading. In 2017, I read 17 books, which was a humorous coincidence. I know many people read 17 books in one month, but I feel like for someone getting back into reading after taking a few years off, it’s pretty good. Here’s what I read in 2017 in the order I read them:

  1. Scrappy Little Nobody By: Anna Kendrick
  2. I Know Why the Caged Bird Sings By: Maya Angelou
  3. The Difference Between You and Me By: Madeleine George
  4. A Tree Grows in Brooklynn By: Betty Smith
  5. Been Here All Along By: Sandy Hall
  6. More Happy Than Not By: Adam Silvera
  7. Lies My Girlfriend Told Me By: Julie Anne Peters
  8. The Summer I Wasn’t Me By: Jessica Verdi
  9. Vanished By: E.E. Cooper
  10. Pretend You Love Me By: Julie Anne Peters
  11. Our Own Private Universe By: Robin Talley
  12. Georgia Peaches and Other Forbidden Fruit By: Jaye Robbin Brown
  13. History is All You Left Me By: Adam Silvera
  14. Take This Man By: Brando Skyhorse
  15. Bad Feminist By: Roxane Gay
  16. They Both Die At The End By: Adam Silvera
  17. Dress Codes For Small Towns By: Courtney Stevens

 

I feel in love with queer YA fiction, and have made it my mission to read as many as I possibly can in 2018. The discovery of Adam Silvera, has also been amazing. Both History is All You Left Me and They Both Die at the End quickly became some of my favorite books of all time. The Difference Between You and Me, will always have a special place in my heart, as it is the first queer book I had ever read. My personal goal for this year was to read 12 books, one a month, but I never wanted it to feel like a chore. Luckily, it didn’t, and I was even able to surpass that goal. In 2018, my goal is to read AT LEAST 24 books, or two a month.

What was your favorite book you read this year / What is your favorite book in general?

I’d love to hear any recommendations!

Merry Christmas 2017!

Merry Christmas!

I hope you all are enjoying the holiday festivities, and spending time with those you love. So far, I’ve had a great Christmas Eve. We spent the morning volunteering at a local soup kitchen, and then attend the candlelit service at our Church. The whole church filled with candlelight, while everyone sings Silent Night, is my favorite part of Christmas. In that moment, everything feels peaceful and all feels right in the world.

This time last year feels like a life time ago, yet I can’t believe 2017 is already coming to an end. I’m excited to enjoy the rest of my time off from school, continue my holiday celebrations, and see where 2018 takes me.

Lots of love to you and your family,

Alyssa