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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Independence and Chronic Illness

Disability often requires some of our independence to be given up. Personally, my independence has waxed and waned over the years continuously. While it’s nice to have periods of time where I’m capable of being very independent, it can be incredibly hard to have to relinquish some of that independence when my condition worsens. I was watching Jessica Kellgren-Fozard’s video about her personal relationship with independence and being chronically ill, and it made me think about my relationship with independence. I highly suggest watching the video, and subscribing to her. She is a disabled lesbian, from England where she resides with her wife and adorable dog.

At times, independence for me can mean being able to do my laundry or cook a meal. It may sound so simple, but these are the things so many people take for granted. Currently, independence for me means driving myself to school, and going to my classes. I still live with my parents, so some of my independence is relinquished to them; They cook most of the time, and they pay the bills (thank god). There’s meaningful independence is everyday activities, like doing the dishes or folding the laundry, that many able-bodied people fail to recognize.

My independence can fluctuate day to day, and even hour to hour. One day I can drive myself everywhere I need to go, and the next day I can barely take out the trash. This concept of ability changing on an hourly basis is something able-bodied people tend to struggle with. In their world, you’re either completely incapacitated or completely fine. I live the vast majority of my life in the in-between stages, which can make things complicated. It can also be difficult for my parents. They believe they know how I’m feeling by looking at me, but they’re often wrong. I get a certain look in my face when I feel like I’m going to pass out or vomit, but I can feel awful without the specific look. Sometimes I’ll say I’m feeling terrible, but because I “look fine” they ask me to do something immediately like feed the dogs or unload the dishwasher. It becomes frustrating when you want to help, but also just explicitly stated you aren’t doing well in the moment. Being the obedient child I am, I force myself to do what is asked of me even when it makes me feel worse.

I want to be able to help my parents whenever they ask, but it just isn’t a realistic “want”  sometimes. Learning to relinquish some of your independence to other people can be difficult. I’m someone who likes to be in control, and likes to be as independent as possible. Being chronically ill has taught me, that there’s strength in vulnerability. Knowing when to ask for assistance is a necessary part of being disabled, but it can feel demoralizing. It is however, a choice to relinquish that independence, which makes asking for help less patronizing to me. There’s so much strength in admitting you need assistance.

We live in a society that worships independence to an unhealthy level. No person, disabled or not, can do everything by themselves 100% of the time. You’re life’s worth shouldn’t rely on whether or not you can drive a car, or wash your own hair. All levels of independence are beautiful and should be celebrated. Relinquishing some of your independence does not make you weak, but instead shows an incredible strength.

Shit My Ableist Family Members Say: Chronically Misunderstood

After spending Thanksgiving with my extended family, I realized about 95% of my conversations with them included a lot of ableism and me gritting my teeth. There’s some of things they’ve said to me recently:

  1. “I’m so glad you’re better!!!”

My Grandmother told me how happy she was that I was all better at Thanksgiving, when I literally had an endoscopy the day before. About 80% of the time I was at her house I felt like I was being stabbed in the stomach, but my face told another story. Just because I’m good at pretending to be “fine” for your sake, doesn’t mean I’m not screaming in pain.

2. “You’ve learned some great life lessons though”

Yes, I became sick as a child so I could learn a few lessons. One of them is how absolutely insensitive that comment is. Another, is how to restrain myself form decking you in the face.

3. “Do you have a real life now?” or “Are you truly living now?”

Apparently my life wasn’t worth living when I laid in bed sick for months, but dragging my aching body around to school is a meaningful and “real” life.

4. “Sometimes God just answers prayers slowly”

While I am a Christian and believe in God, the idea that one day God is going to magically cure me is ridiculous. Some problems don’t have resolutions, and that expectation leads to devastation.

5. “People who apply for disability are just lazy”

If I wasn’t a minor I definitely would have been on disability, and there’s nothing wrong with that. Also, wow just wow.

6. “I just don’t know how it’s possible that you’re STILL sick!”

Touche

…but it’s called “chronic” illness for a reason.

 

These are just a few of my favorite gems! There’s many, many more and a part two may have to happen soon.

What is the most ridiculous thing people say to you about your chronic illness(es) / disabilities? I’m sure you all have some great stories!

November Health Update

Quite a bit has changed since my last health update!

I’ve now seen my electrophysiologist two more times, even though he originally wanted to refer me on. I went on flecainide acetate for a few weeks, but it made me incredibly hypotensive and I couldn’t properly function on it, so we decided to discontinue it. I’m currently on Digoxin, and my symptoms have improved. A major part of the improvement is due to coming off the flecainide acetate, but I do think the Digoxin may be helping some. I saw him on Monday, and we are going to continue to digoxin and possibly increase it, depending on the results of my endoscopy.

At my last appointment, he brought up the possibility of having another electrophysiology study, but this time actually ablating my sinus node. I didn’t have an ablation last time, because I don’t have SVT so technically nothing is structurally wrong with my heart. The complete ablation of the sinus node for people like me who have IST, a form of dysautonomia, results in a pacemaker over 50% of the time. To me, this would be a last case resort. I’m technically on the last medication that is prescribed for IST, so if it doesn’t continue to work I’m kinda screwed. However, I’ve read all of the research papers I can get my hands on and this procedure is often contra-indicated for people with dysautonomia. As of right now I don’t really view it as an option, but if things get worse it may have to be a possibility.

On Wednesday, I had an endoscopy mainly to test for systemic mastocytosis. I had no visible abnormalities, which we expected. This was my third endoscopy, so we were basically only doing it for the biopsies, which they did a ton of. The procedure went really smoothly and quickly. I had felt absolutely terrible on Tuesday, but even with the anesthesia I felt okay Wednesday. Thursday and Friday however were a whole other story. I felt like I was being stabbed in the stomach for most of Thanksgiving, and Friday I had a migraine most of the day. I tried by best to celebrate and push through, even though I felt quite terrible.  I’m moderately nervous for the results, since having systemic mastocytosis is kind of a big deal, but on the other hand having yet another false test is going to be frustrating. You really can’t win for losing with chronic illness.

I keep having really bad days/weeks and then really good days/weeks, so it’s been hard to judge the pattern of my health. I’m incredibly grateful for the good days, especially when they’re proceeded with a terrible day. I think I’m doing a pretty good job of handling it all, but I am pushing myself pretty hard. Having a few days off of school for Thanksgiving has been nice, and before we know it, it will be Christmas break. I still feel like I’m slowly declining, but I also feel hopeful due to the new doctors I’ve added to my arsenal.

How’s your health been?

I hope you’ve all been having a good November!

 

Weight Fluctuations Due to Chronic Illness

I wrote a post all the way back in May about my journey with weight fluctuations due to medication. At the time I was going to the gym 5-6 days a week, and eating incredibly healthy. So, what’s happened since?

I started trying to lose the weight I gained on Gabapentin back in April, and since then I’ve lost a little over 30 pounds! Honestly I can’t believe I’ve lost that much, and I never really believed I’d be able to do it. As I mentioned in my original post, I’ve watched multiple family members struggle with their weight, which was discouraging. Now that I’ve lost the majority of the weight I gained, I feel so much more like myself. After the weight gain, my body didn’t feel right and I felt uncomfortable all of the time. I don’t think we should equate beauty or self-confidence with weight, and I recognize some of these thought aren’t exactly body-positive. However, losing the weight has lifted the uncomfortable feeling that was dragging me down.

As of right now, my health is no longer in the place that I can work out as much as I was. The combination of school and declining health, doesn’t leave much time for anything else. I’m hoping once I get my IST under control, I’ll be able to work out again. I’m still eating pretty healthy, but I’m not as crazy strict as I once was. Every one in a while you’ve gotta live a little, ya know? Plus, you can only eat so many scrambled eggs and apples before you go crazy.

It will be a year in November since I stopped drinking any carbonated beverages or caffeine. While I wasn’t losing weight at the time, I do think that decision has made the whole process easier. Plus now that I’ve been doing this for a while it’s much easier. Even though I’ve loosened the reigns some I’m still continuously losing weight, and trying to live as healthy of a lifestyle as possible. Right now my main goals are to lose around 10 more pounds, and hopefully be able to workout again soon.

Chronic illness makes weight loss/gain super difficult, but not always impossible. If you are currently trying to lose or gain weight, don’t feel discouraged! It may feel incredibly slow, but the fact that you are trying your best is all that matters. If you’ve been working hard but your health gets in the way, that’s also okay. Sometimes you’ve got to take a break, or slow down in order to take care of yourself.

Do you have any experience with weight fluctuations due to chronic illness or medication?

I hope you are all doing well!

Gastro Appointment and Action Plans

I had a super busy week last week at school with quizzes, exams, and a lab for biology. I felt way less prepared for these tests than I did for my first round of tests, but luckily I actually did really well on everything. On top of all of the school stuff my health is continuing to spiral, and I’m having near syncope episodes where I become disoriented everyday, and they’ve gotten more severe.

One positive thing that happened last week is that I finally saw a new Gastroenterologist! I really liked him, which to be honest I wasn’t expecting to, since I saw two other doctors in that practice when I started to become chronically ill, and they thought I was faking it. He however, was very kind and had a few ideas on where to go next. He thinks I might have post-infection IBS, since I had some weird blood work five years ago that said I had a parasite. I thought this was a false positive since the parasite mainly lives in Africa, but apparently although possible it is incredibly uncommon for that to happen. If i did in fact have the parasite, then it may have damaged my GI tract causing the IBS.

I’ve actually never been diagnosed with IBS, even though all of my gastro symptoms fit the definition. He wants to do a few more tests before calling it IBS, since IBS really is just a nice acronym for “something in your GI tract is messed up but we don’t really know what.” I had some blood work and an x-ray, that I should be getting the results about at the end of this week. If everything looks good, we’re probably going to do an endoscopy since he thinks I might have systemic mastocytosis. I’ve done the tryptase test for MCAS, and it was negative but apparently the best way to diagnose it is by a biopsy of the small intestine, if you have gastro symptoms, or a bone marrow sample. Since I have a ton of gastro symptoms and doing an endoscopy is much less invasive than a bone marrow biopsy, we’re probably going to do that. If the regular endoscopy also fails to bring any good information, we’re considering a capsule endoscopy to make sure I don’t have any disease activity in the part of the small intestine that you can’t see during a colonoscopy and endoscopy.

If you missed my last update, I talked about how I tried corlanor for my IST and it really didn’t go well. This past weekend my doctor had me try it again, but now he only wants me to take it once in the morning every other day. I tried this on Saturday and it made me feel really crappy again, so I definitely won’t be taking corlanor anymore. The electrophysiologist also doesn’t want to see me anymore (even though I only saw him once) and is referring me to the research hospital that is attached to a med school in the city. His office has yet to send the referral, so I hope they hurry up since my heart is becoming quite an issue on a daily basis.

I’m sorry this is quite a Debby-Downer post, but it’s just reality at the moment! I am feeling positive about the new gastroenterologist and I’m hopeful that the referral for a new cardiologist will be helpful. I’ve been pushing myself so hard to make it to school, and get really good grades, so I know my blogging hasn’t been the best. Being chronically ill and being a student feels nearly impossible the majority of the time, so doing anything extra has been out of the question, especially the past two weeks. I’m hoping to post more regularly soon!

I hope you all are doing well!

Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!