Gender and Chronic Illness

Most abled people assume that if you get sick there will be a doctor there full of empathy and ready to save the day – this however is not the narrative of many people who have chronic illnesses.

While I personally have never been straight up told I’m faking it, it’s been implied and stated multiple times that I was being dramatic or “just had anxiety.” I feel like it’s important to note that every time this has happened, it was coming from a man. I came to the realization a long time ago that a lot of medical professionals see me as a teenage girl who’s over dramatic and just wants to get a few days off school. This profiling happens before I open my mouth and once that decision has been made in their mind it is nearly impossible to change it.

Many people who end of being diagnosed with endometriosis or ovarian cysts are told that it’s “just their period” and that they need to learn how to deal with cramps.Women and feminine presenting people are disproportionally targeted when it comes to doctors disbelief of their symptoms. Men and masculine presenting people on the other hand often try to “tough it out” and don’t go to the doctor until long after it’s necessary due to being afraid of not “taking it like a man” ; or they do go to the doctor and the doctor essentially tells them to “man up.” These gender stereotypes are incredibly harmful, especially within the medical world.

Back in February of this year I had an electrophysiology study, and the experience was less than pleasant. After the study I had a reaction to the medication they gave me to speed up my heart rate, and my whole body began to tremor. A rapid response team was called and all of the nurses were visibly concerned, and knew something was wrong. The doctor who came in however, was super nonchalant about everything and left the room while I was still having the tremors.

Later the next morning when my doctor (at the time) came to see me he said he thought I had anxiety and that’s why the whole incident occurred. Obviously that was not the case, and he just didn’t want to figure out what is actually wrong with me. There are two conclusions I’ve drawn from this situation: 1) because I’m a teenage girl he thought I was being dramatic, 2) it was going to take time and testing to figure out what’s wrong with my heart (plus I’m considered a “complicated care”) so my situation would not be easy money for him.

This is just one of many events where men downplayed my symptoms / disability and reduced me to “just an anxious teenage girl.” Not all chronic illnesses are created equally and not all experiences with chronic illness are the same. Gender and Sex can be a huge factor is getting a diagnosis, even when your illness has nothing to do with either of those. Have you ever had a bad medical experience due to your gender? Did gender or sex affect your diagnosis process?

 

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The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

Why Do Doctor’s Offices Suck So Much?

This is purely a rant on why I hate the receptionists in doctors offices.

 

Today I had an appointment with a sleep neurologist. My PCP referred me to him, and since I’ve had so much trouble with sleep and fatigue, I thought seeing him would be worth my time. His office is in the city so it’s a 30-45 minute drive depending on the traffic, and we had an 8:30 appointment, so I had to be up way earlier than I normally am.

Fora normal person this wouldn’t be that big of a deal. My body however, hates being up early. Whenever I get up before my body is ready I feel nauseous and get a headache. It’s also inevitable that in the afternoon I’ll crash, hard. Since this appointment was important though, I was willing to risk it.

After driving 45 minutes down there, we arrive to find out they cancelled our appointment. Apparently they had been calling the wrong phone number to confirm the appointment. Everyone makes mistakes, so this wouldn’t be a huge deal, but they had already called my mom multiple times on the correct number, so they did at one point have the right number. We also confirmed the appointment on their online patient portal.

The receptionist also tells us that we’re out of network and they don’t take our insurance. They should have never agreed to see me if they’re out of network. She tells us we could see him, if we paid $250 out of pocket. No ones time, in my opinion, is worth that much for one doctors visit. Since they had taken it upon themselves to cancel the appointment though, we wouldn’t even get to see him today.

Now that’s all bad, but they apologized right? Wrong. Both receptionists said it wasn’t there fault and it must have been someone else. We left because there is no use in arguing with incompetent people. An apology would have made this situation much better, but even when my mom called to try and talk to someone else, they didn’t apologize nor did they care. They even said that they had never heard of online conformation. To which my mom replied, “well then it sounds like you have another problem don’t you?” which made me crack up. They also repeated back her phone number wrong to her three times, which means after going to the office and talking to the receptionists there, they didn’t even change the number in the computer system.

Unfortunately this isn’t the first time this has happened. It’s at least the third time we’ve gone to a doctors office only to find out they canceled our appointment/didn’t take our insurance/never made the appointment in the first place. I understand that it’s a boring job, and that people make mistakes, but this was a long series of mistakes (probably made my multiple people) and they way the handled it was incredibly unprofessional. “I don’t care we screwed up, sucks for you” was the general attitude.

The office manager did called call my mom, and was apologetic. He’s trying to get us in on Monday and is giving us a discount. More than wasting my time, waking up early, wasting my moms time, and making her take half a day off work to take me, not having answers is the worst part. I’m happy this situation seems like it’s going to have a positive ending, but they don’t all turn out so well in the end.

Ugh. What are your experiences with difficult doctors office?

Have you ever showed up to a doctors office only to find out you don’t have an appointment?

 

The Guilt of Chronic Illness

We shouldn’t feel guilt of things that are out of our control, but I don’t know anyone who’s dealt with a chronic illness that doesn’t ever feel guilty.

I mostly feel guilty that my parents spend so much time taking me to doctor, especially my mom, and that they have spent so much money on medical treatments. They never try to purposefully make me feel bad, but I know this is hard for them too. They didn’t ask for this anymore than I did.

For almost all of my doctors appointments my mom’s been there. It’s not that my Dad doesn’t care, his work just isn’t nearly as flexible. She’s spent countless hours in doctor’s offices, ER’s, and hospital rooms. She’s advocated endlessly for me, even when she was tired or not feeling well herself. I am so grateful for her, but I also feel terrible that she’s sacrificed so much for me.

The money is a different issue. We’ve always been very fortunate to be middle class. During the five years I’ve been chronically ill my dad was laid off and then unemployed for a little over a year. Luckily he got a pretty good severance deal from his previous employer but it was still really hard on our family financially and emotionally. My illness did not stop just because he lost his job, and paying tens of thousands of dollars in medical bills took a blow to our finances. While we’ve also been very fortunate to have always had medial insurance, the cost of doctors office visits, medications,  and diagnostic testing really adds up. Knowing that even if I have a job that pays really well in the future, I will never be able to repay them is a hard pill to swallow. I see that every time they check the mail there’s another medical bill that’s usually for me, and it makes me feel incredibly guilty.

Another thing that makes me feel guilty is seeing my parents get upset when I’m not feeling well. Sometimes I try lying and say I’m feeling okay, but they can usually see right through me; I’m not a very good liar. At times I forget that this is really hard for them emotionally as well. They are nearly as frustrated as me that I don’t have a diagnosis or an accurate treatment plan. Their heart breaks along with mine when we hear another doctor tell us they don’t know what’s going on or another medication doesn’t work. I wish I could take all of their pain away, and knowing I can’t is the  hardest part.

I know that feeling guilty won’t fix the situation or make it any better, but seeing your issues affecting someone else is difficult. I hope that if you feel guilty about being chronically ill that you can see that it isn’t your fault. Chronic illness is a beast that no one causes.

– Alyssa

 

Self-Advocating with Chronic Illness

Now I have to admit, this hasn’t always been my strong suit.

I would try to build the courage to speak up and stand firm against doctors when they questioned my symptoms or wanted to start a treatment plan I didn’t agree with but when the time came to self-advocate I found it rather difficult.

I’m definitely more comfortable disagreeing or refuting doctors now than I was at the beginning of my journey, then again I’ve had five years to practice. Doctors are people too, even though society puts them on a pedestal they don’t always get it right. As a patient there are times where it’s your job to say no and put your foot down. It’s so easy to blindly follow a Doctors orders, but that can end poorly quick. Doing your research and getting to know your own body is crucial when chronically ill.

Self-advocating is probably one of the most important things a chronically ill patient has to do. Sometimes you have to push and push to get the adequate medical care you deserve. Other times you’re fighting with the insurance company to try and get them to cover a medication that you desperately need. It’s never ending and exhausting, but so so necessary. Unfortunately with some chronic illnesses many Doctors may not be aware of all the treatment options available or even aware of what the illness entails at all. While it’s always best to see a doctor who’s treated someone with your specific illness before, that isn’t always an option. In those cases you have to be able to self-advocate and teach the health care professionals about what you need.

I have a lot of symptoms that are “weird” or don’t match the other things I deal with. I’ve also dealt with some side effects of medication that are rather uncommon, and instead of listening Doctors and other health care professionals can make excuses or just straight up not believe you. One problem a lot of people with chronic pain run into when visiting the ER is the staff not believing you’re at a certain pain level because you’re not crying or don’t “look like you’re in that much pain.” I personally don’t respond to pain by crying, and unless you know me really well you probably can’t tell by my face how I’m feeling. There is no wrong reaction to pain, but sometimes certain reactions make it more difficult to receive the care you need.

When you’re in the ER or admitted to the hospital it’s always best to have someone there who can help advocate for you. There may be times where you’re too incapacitated to self-advocate and it’s important to have a friend or family member who knows your situation and can help relay information to the doctors and nurses. I know when I’m in extreme pain, brain fog sets in and it makes it a lot harder to explain things and recall everything that’s happened leading up to the ER visit, hospital admission, doctor’s appointment etc. Other times I just don’t have the energy to explain everything or go back and forth with the doctors and nurses.

A big part of self-advocating for your health comes down to confidence. Confidence speaking to strangers and authority figures, confidence talking about your body and uncomfortable things that may come with that, and confidence being honest about how you’re really feeling instead of giving everyone the rose-colored glasses version. For me (and I think most people) confidence will always be a journey. Some days I feel ready to tackle the world and I don’t care what anyone else thinks, and other days I feel insecure. Self-advocating for my health has helped me gain confidence when speaking to authority figures and talking about uncomfortable subjects.

Do you find self-advocating difficult? How do you self-advocate? Let me know!

Lots of Love,

Alyssa

Why are you here?: Chronically Misunderstood

This one is going to be a bit of a back story, but I’ll make it quick. At the time I in high school and it was my freshman year. The school I went to really didn’t like that I was absent a lot and made me jump through a lot of hoops in order to “make up my time.” This had happened for the past two years I was in middle school as well, but their obsession with me being in school makes this story funny to me. Also at this time doctors thought I had abdominal migraines also known as cyclical vomiting syndrome.

I walked into school late and went to check in  before heading to class. Normally I would go to my house office, but the secretary at the front desk stopped me and asked me my name. When I told her who I was she looked me up in the computer system which I thought was odd. I had come into school late a lot and no one ever questioned me. Normally I just went to the office, got a note, and was on my way.

The lady started to look really confused and said, “you aren’t supposed to be here.” I didn’t know what to say to that. Here I am at school, specifically at a school that get’s very angry when I’m absent yet this lady is telling me I’m not supposed to be here? “You’ve been counted absent for the whole day,” she told me. I responded with, “I don’t know why, I didn’t tell anyone I was going to be gone all day.”

She furiously tapped away on the computer and I just stood there throughly confused. She walked away into the main office and came back looking relieved. She exclaims, rather loudly I might add, ” OH YOU’RE STOMACH MIGRAINE GIRL!” I guess I had developed a reputation. “Yeah…” I replied trying not to laugh. For some reason being stomach migraine girl made everything okay and she let me go on my way. I’m still honestly not sure what that situation was all about, but it was funny nonetheless.

Tell me a funny or weird story about your high school experience!

Lots of Love,

Alyssa