endoME

[hadassahgrace]

Dealing with Doctors When You Have a Chronic Illness

When you have a chronic illness, or deal with chronic pain, you learn pretty quickly that you are your best and only advocate. Doctors can often be rude, dismissive, and distrustful. They may make you feel like you’re unimportant, or imply your symptoms aren’t as bad as they really are. They may even accuse you of lying. 

It took two years, and six doctors, to finally have my endometriosis taken seriously. It was frustrating, and I often felt like maybe I was going crazy. Like maybe the pain really was all in my head.  Here are a few things I’ve found helpful, and some advice from a friend of mine who is a doctor. Please feel free to add to them in reblogs or messages, I’d like this to be comprehensive. 

Some helpful phrases: I’m not happy with my current method of treatment because…

I no longer feel my symptoms are manageable.

I want to trust your expertise, but I don’t feel that I’m being taken seriously.

I’m confused, can you repeat that?

I don’t understand, can you simplify that?

That will help with the pain. Is there anything that can help with…?

When going to see a doctor about a diagnosis

Do

Make a list of your symptoms, medications (including supplements), medical history, and family medical history before going in.

Be firm and clear about how your symptoms have affected your life, and what you would like from any possible treatment (for example, is it more important to you that you are able to work full time, or that you are completely free of pain?)

Tell your doctor all your symptoms, but make sure they know which ones are the most severe, and which ones affect your life the most.

If you have a uterus, tell your doctor if you plan to have children someday.

If you don’t plan to have children, ask your doctor if the treatment would be different for someone without a uterus, or who they considered old enough to decide not to have children. Ask why they have chosen the current method of treatment instead.

Ask your doctor to repeat any instructions they have for you, and write them down. Speak up if you’re confused, and follow the instructions carefully.

Don’t

Exaggerate any of your symptoms in order to be taken more seriously.

Downplay any of your symptoms because you don’t want to seem annoying or attention-seeking.

Leave anything out because it’s embarrassing or difficult to talk about. I can guarantee your doctor has heard and seen worse.

Lie to your doctor about your diet, exercise, or drug and alcohol use. They won’t judge you, or report you to the police, and it could be relevant.

Leave the appointment without a solution, prescription, or avenue of further research (eg blood tests, or a referral to a specialist).

Get angry or feel ripped off if the doctor has to google a few things. GPs are general practitioners, and it would be impossible for them to know everything about every pill and illness on earth. They’ll still get more out of a google search than you will, because they have a much better understanding of medicine and the human body. Edit: Just to clarify, because I made someone really angry because I think I wasn’t clear on this point. If you go to a specialist, and they type all your symptoms into google and base your diagnosis off of that, of course you have every right to be angry. I’m talking about a GP checking side effects or contraindications before prescribing you something, or quickly checking to see if there’s any new information about your condition since the last time they learned about it. It would be impossible for them to know everything about every illness and medication ever, and I would personally rather they checked before prescribing me something. Doctors have access to medical journals and information that we don’t have access to, and in general they know a lot more about bodies than the average person. 

Of course, your doctor should listen to you, and talk to you about your symptoms. That’s kind of the whole point of this entire post. I just don’t think you should automatically dismiss a doctor as an incompetent idiot just because they might want to double check something before tell you.

How to talk about fatigue with your doctor

Fatigue or exhaustion can be hard to describe, and just saying you’re tired all the time can be misleading.

Write down the times of day you feel most tired for at least a few weeks before going in. Also write down what you eat, and any exercise you do. This may be helpful to the doctor, and even if it isn’t, you may be able to find some patterns that help you manage your fatigue on your own.

The doctor may ask you to rate the feeling of fatigue on a scale of 1 - 10. This can be helpful, but is also subjective. Make sure you also communicate how the fatigue has affected your life. Is it preventing you from going to work? Have you had to give up the things you love because you feel too tired to do them? Has it affected your relationships?

How to talk about pain with your doctor

Describe the physical sensation. Just saying it hurts doesn’t help the doctor figure out what’s going on, so you need to be specific. You can use words like constant, intermittent, throbbing, acute, aching, dull, sharp, burning, stabbing, stiff or tight.

You can describe your pain by comparing it to other things. For example, my pain feels like needles, being squeezed too hard, a broken bone, a toothache, a cut from a knife, an electric shock, waves that come and go, a bad sunburn, banging my elbow etc

Describe where the pain is taking place. Be specific, but try not to guess at a particular organ or muscle, even if you’re very familiar with the human body. 

If it’s helpful, you can print out this chart, and colour in the areas that hurt.

Make sure you specify whether the pain is deep inside your body, or superficial (on or just under the skin).

Tell your doctor what effect the pain is having on your life. This is extremely important. They may ask you to rate your pain on a scale of 1 - 10, which can be helpful, but pain is subjective. One person’s 8 might be another person’s 4. 

It is much more informative in the case of chronic pain to tell your doctor things like: My pain stops me from going to work on a regular basis; my pain prevents me from doing the things that I love, my pain makes me irritable, depressed, anxious, or short tempered; my pain is unbearable; I am no longer able to work full time as a result of my pain; my pain stops me from having sex; my pain has affected my relationships; I no longer feel I can manage my pain.

You may think your doctor is only interested in physical symptoms, but in reality telling them the ways your illness has affected your life gives them a much clearer idea of the severity of the symptoms, and of what treatments are necessary. 

I hope this is helpful.

[into-the-endless-night]

*puts on full face of makeup to cover up how shitty I feel inside*

[yikesabbee]

life with a chronic illness:

[cwote]

Just start.

@sheisrecovering xoxo

[icantdrawbutdontcare]

You’re supposed to stop before you are at your wits’ end. You need to know your limits.

[Green, black and red text that reads: Doing your best does not mean working yourself to a mental breakdown]

[soc-nmnf]

Studying with a Chronic Illness

I have had a few people ask for some tips for studying with a chronic illness however some of these could apply to anyone. 

Some broad tips I have are:

·         Have a Strong Support Network: This is really important as they will be able to help and support you through the bad times. This can include family, friends, doctors, teachers or other staff. With the doctors it is ok to ask for help, I know I wouldn’t have made it to university if it wasn’t for my psychologist.

·         Try Different Study Techniques: It wasn’t until this year that I found a study technique that suited me and that I enjoyed. Look around tumblr and during your break try a few until you find one that you like. You can even combine a few to make your own unique study method. When I am in a period of severe procrastination I use the google chrome extension Strict Workflow that uses the pomodoro technique and blocks social media sites which is really helpful. Check my references section for more study techniques and tips.

·         Start Early: Make sure that you start to study early that way if you have some bad days there is not as much to catch up on and it won’t be as stressful at the end. For assignments this might just be a bit of research every day, it doesn’t mean you have to start writing straight away. For exams prep it may be just looking over your work at the end of the week or summarising it so that there is less to do during exams.

·         Spread Out Assessment: Speak with your school and teachers to see if it would be possible to make sure that your assessment is spread out not clumped together so you are not as stressed. This is also good as if you are having bad days it might not impact on all your subjects and you have less to catch up on.

·         Tidy Space: I use to be absolutely terrible at this, my desk use to be completely covered with papers, books and all sorts of other stuff. Now however I set about 5 minutes aside every day to clean it up and there has been a significant improvement. After the first major clean if you tidy it every day it doesn’t actually take that much time or effort. I found I also concentrate better with it tidy.

·         Treaty Yourself: Set yourself some goals, they can be small or large, and when you reach them treat yourself. For small goals this might be 5 extra minutes watching movies or a piece of chocolate and for larger goals you could get something that you have wanted for a while like a book or clothes. This gives you an incentive to study.

·         It is ok to Take a Break: The weekend before my exam session of this semester I didn’t study for a few days as I was just feeling so sick. This is ok as in the long run it is better to take the break then than push through it and make yourself worse. Also make sure to take the time to relax on your break so that you are refreshed for the start of the new school year.

When Looking for Colleges/universities:

·         Check if it has Disability Support Services: When you have a chronic illness this is vital as they can give you special exam conditions, access to software, help with extensions on assessment and make your time at college as easy as possible. Check beforehand what their requirements are in terms of documentation. My university also has a student association for students with a disability/chronic illness and they are really helpful and nice. I meet up with them every week and it is good to be able to speak to others who get it.

·         Does the College/ University Have Special Consideration?: I know that in Australia at least a lot of the universities give those with disabilities or chronic illnesses that have impacted on their study special consideration. For me this meant bonus points and pushed my rank up high enough to get into the course I wanted.

·         Check What Health Services are Available on Campus: At my university we have a free health center and counselling available to all students as well as a pharmacy on campus. For me this has been invaluable as I tried a private doctor who turned me away saying my stomach pain was just stress but the doctor on campus took me seriously and sent me to a specialist who found it was a re-occurrence of a previous illness.

·         If Moving Into a Dorm: Is it self-catered or catered? Will you have time to cook if it is not catered? What support services are available to residents?  What do they do for residents with disabilities/chronic illness?

Remember that your health is the most important thing and that you don’t have to be super organised (I know I’m not) or have expensive stationery to be a studyblr it is a community of people who share their studying. 

Hope this helps some people.

Sending gentle hugs and spoons to all the spoonie students out there x

[erinstudiesthings-deactivated20]

Really.

You can fail an assignment, a test, a class, a grade level. You can drop out of school entirely. And it’s okay. It sucks and it’s hard and it’s messy, absolutely. But it’s okay.

It doesn’t make you any less of a valuable, worthy person and isn’t an indication of your intelligence. 

You’re doing just fine. Even when you aren’t. <3

[erinstudiesthings-deactivated20]

How to study when you’re feeling (extra) shitty

If you’re chronically ill and in school, you may have already figured out a system that works for you on most days. Even if that’s the case, sometimes a flare comes out of left field and you’re left scrambling. These are a few things that I’ve found helpful in surviving extra bad days during the school year. A lot of this also applies to acute illness whether you’re chronically ill or not.

Maybe don’t study

Are you going to make yourself feel worse if you study now? Is pushing through going to jeopardize your health? Are you just feeling too awful? If so, it’s okay to let things go for an hour, a day, a week, or longer.

You come first. Always.

Medicate

Do you have PRN or OTC medications that can help with symptom management? Have you taken your daily meds? Do that before you try to do anything else. You’re going to be able to get a lot more done (not to mention the fact that you just plain won’t feel as miserable) if you take whatever medication you have available to you rather than trying to tough it out.

Check in with yourself

Have you gotten some sort of nutrition? Are you sufficiently hydrated? Do you need to close your eyes for a few? Do whatever is accessible to you in the moment to take care of yourself.

Prioritize

What absolutely has to be done now and what can wait until you’re closer to your baseline?  Are there things that you can get an extension on? Professors that are more lenient with grading? Classes you have opportunities for extra credit in? Does it make sense to skip class and use those spoons to get work done? On the assignments that you have to get done now, is there anything that you feel comfortable doing a mediocre job on just to get it done?  Figure out what’s the most important and go from there.

Communicate

If you’re going to turn things in late, miss class, need an extension, or just want to give your professor a heads up that you’re not feeling great and X may happen as a result, shoot them an email. The sooner the better, but it’s infinitely preferable to send a last second email asking for an extension (or to send one after the fact) than not to send one at all. If you can, I’d also really recommend talking with your professor before there’s a problem, but if that’s not a possibility, don’t stress it.

If you feel like this is going to be a longer term issue, it’s a good idea to communicate with disability services and/or your advisor to see what your options are.

Get comfy (ish)

Find a study spot that you can work in effectively and make yourself as comfortable as possible. When my pain levels are high, I don’t like to work it public spaces where I have to sit upright and deal with the extra sensory input, so I usually get set up on my couch with a heating pad, my maternity pillow (these things are the best), and a lap desk. 

Maybe for you it makes sense to set yourself up in the bathroom so you don’t have to run back and forth every two seconds. Or maybe you need to work somewhere dark and quiet. There’s really no way to do this wrong, so play around and figure out what works for you.

Take breaks

A 10-2 system often works well for me, but this is another one where you really can’t do it wrong. Take as many breaks as you need for as long as you need them. Play around to find something that feels comfortable for you.

Be gentle with yourself

Didn’t get everything you wanted to done? That’s okay. Didn’t get anything at all done? That’s okay too. It’s okay to rest. Your well being is always the most important thing.

Happy studying!

[spoonie-studyblr]

Trying to study with a chronic illness

[keeponkeepingon13-blog1]

Received this gem in the mail today 💕✨🙏🏼 thank you so much @wordsneversaidx Was in need of a visual affirmation to get me through those tough days and this is perfect 😭😍

[id-rather-be-studying]

Some tips for chronically ill students

So I’ve been sick since I was nine, and over the years I have definitely picked up some great tips for keeping on top of your work.

Tell your teachers/professors. I know it’s embarrassing. You don’t want them to think of you differently, or to feel pity for you. I get that, and I did that for years while barely scraping by when it came to missed work. Send them an email, see them after class. You don’t have to give your entire medical history; just let them know that you have an illness that requires you to miss a lot of school.

Get a 504 Plan if you can. In the United States, K-12 and college students with disabilities are eligible for a 504 plan. This just means that this school is required to give you accommodations. Honestly, it IS a huge hassle, but it was the best thing I’ve done. Before, teachers didn’t think I was serious about my illness, but once I had the 504 plan, they were required to extend my due dates and allow extra absences. I’m not sure if other countries have something similar, but definitely look into it. I have a 504 meeting next month where I will be discussing my accommodations with my new teachers.

Sleep. I know that schools tend to think that students should always be doing work and never resting, but chronically-ill students NEED to rest. Personally, I come home from school and take a nap when I don’t have to be in the theater. I know a lot of people who do their homework as soon as they get home, and then go to bed early. I take lots of naps instead of sleeping longer, but it’s up to your body to decide what is best. 

Eat healthy. Now, I know this isn’t always possible. When I’m working a musical, I live off of McDonald’s and Subway. I know that it’s hard, but try to eat well whenever possible. Pack some nuts and raisins in your bag for whenever you are feeling hungry. That way, you won’t be tempted to head to the snack machine. If you take a lot of medications, you may like to eat smaller meals multiple times a day so that you can eat every time you take your meds. If you do this, try to make your meals things like apples and peanut butter or a salad. Again, I know this isn’t always possible, especially if you’re a poor college student, but try to have at least one healthy meal a day.

Stick to a schedule. With doctor’s appointments and unexpected sick days, it can definitely be hard to stick to any type of schedule when you’re a sick student. I’m not one of those people to plan my entire day out, but I like to write on a little sticky note the most important things I need to get done that day. Eating meals at the same time each day is also really good, but when nausea strikes at random, it can be difficult to have an appetite at the same time each day. Instead, you may plan out time each day, throughout the day, to sit and relax. You can eat during this time, check social media, watch an episode of your favorite Netflix show. If you’re in college, you may also find it easier if your classes are around the same time each day. 

So this was totally a rant-y post that I thought about and figured I should make, but feel free to add your own tips! I know that being a chronically ill student is hard, and we definitely don’t get the credit we deserve sometimes. Stay strong, and please always remember that your health ALWAYS comes before school.

[erinstudiesthings-deactivated20]

How to catch back up when you’ve fallen behind

I’ve done that thing again. The thing I promise myself won’t happen every single semester, but every semester it happens. I’m behind. 

I’ve had a couple of rough weeks in a row where I’ve let things pile up and now I’m swamped with late work on top of my usual assignments which in turn makes me want to bury my head in the sand and avoid my professors and never to go to class again. Probably not a great strategy.

So, game plan.

Make a to do list. Before you do anything else, sit down and write down everything that’s overdue and everything that’s coming up. Prioritize my due date, class, points, late work policy, whatever you need to do.

Create new deadlines. Using whatever planner type system works for you, figure out when each assignment will be turned in by and block out some extra chunks of time to study.

Communicate with your professors. Even if you have literally no excuse for being behind, you just are, communicate with your professors. If there are extenuating circumstances, this is doubly important as a lot of professors are willing to bend late work policies in these instances. See what your options are for making work up, or, if this isn’t an option, at least touch base to make sure that you’re understanding the material. It’s a good way for them to see that you’re taking the course seriously and a good way for you to get back on track.

If it comes down to it, it’s totally okay to drop or withdraw from a class, but before you do that, make an appointment to talk with the professor and/or your departmental advisor to see if you have any other options (like taking an incomplete).

Take care of yourself. Remember that studying and grades do not define you or your worth. Take time to socialize, get some fresh air, eat, sleep, and whatever else you need to do to take care of yourself. You always come first.

Happy studying!

[studyingcellist-deactivated2018]

Surviving University With a Disability

I’ve been running a studyblr for over a year now and in all my time I have never seen anything about surviving heavy loads of study with a disability. I’m not going to go into detail about my personal disability and I understand that some things won’t work for some people, but I wanted to post a masterpost of things that I have found helpful in my time. Please share this, even if you don’t have a disability, because you never know who in your network will have one and there is such a lack of support.

Firstly;

At my university I live on campus, it’s loud, it’s crowded, and it’s busy. For someone like me who needs time alone to recharge, it’s been a difficult transition to make. My favourite thing that has helped me so far has been having a pair of good noise-cancelling headphones. Now I know they can be very expensive, especially on a uni budget, but they are probably the best investment made in terms of surviving university. 

The ones that I use are the ‘Beats Studio Wireless’ headphones from beats by dre. These are currently retailing for around $479 AUD. 

You can check them out here.

Secondly;

I find it to be super helpful when I have something that I can do at least once a week that is not related to university and gives me a space to be myself and reset. For me (as some of you may have already guessed) I try to make sure that I play my cello at least a few times a week (right now it’s hard with assessment and a state election going on). I find that it gives me the chance to totally reset from everything going on and a place that I can retreat into my own space. 

Thirdly;

It’s been a really big learning curve for me, learning how to prevent overloading myself on assessment and not getting completely burnt out. A few things that I have found massively helpful in this time include:

Being super, super organised. 

Now I’m not just talking about having a planner and writing everything in it then forgetting about it. I’m talking about having about five calendars going at once, AND, staying on top of my workload. My college (in Australia we call residential halls colleges) generally has a massive social calendar and every half-semester they print out a calendar with all of the planned events on it. I have this pinned up in my room, and one of the first things I do after break is I pencil in all of my assessment due dates onto this calendar so that I can see what I need to complete early. I have my bullet journal for my day to day organisation (and there’s that many tutorials out there that I’m not going to tutor you on that, though if you want me to send you a few of my favourites, send me a question and I’ll post them), thirdly, I have my university issued planner that I write everything in as I hear about it. I don’t take this one too seriously, as it’s more of a place to put down ideas of stuff to attend rather than having to remember all of them and give my answer immediately. I also have my apple calendar that I put all (super) important events and assignment due dates in, so that I have reminders on my phone and laptop. Finally I also have a giant wall planner where I write ‘everything’ down so I can see everything at a glance. Unofficially I also use my facebook events list as a way of keeping track of social stuff because EVERYTHING at my college has its own event.

Spicing up where and how I study.

This is where studyblr comes in, as it’s constantly giving me motivation to try new things and study some more. I also love to study in some of the cafes on campus, or in the dining hall at college, just to get out of my room. I don’t enjoy studying in the library though, as, even though my uni has about five major libraries, they’re all really crowded. 

Finally;

Be friends with your lecturers, or at least be on speaking terms with them. This is really helpful if say something is going wrong because you can chat to them before or after a lecture and be like ‘hey, I’m really not coping at the moment, can I miss the tute and submit written work instead?’. You don’t have to tell them that you have a disability, but it can be helpful to tell them as they can help you manage your workload or let you know about stuff that is coming up. This is especially helpful if you’re like me and your disability isn’t immediately obvious.

I hope that this has been helpful and provided some ideas of how to look after yourself when you have a disability at university. Keep strong and look after all of your beautiful selves. 

xx studyingcellist

[spoonie-studyblr]

High motivation, Low spoons

[chronically--courageous-deactiv]

Life with chronic illness

[chronically--courageous-deactiv]

Chronic illness problems.

[chronically--courageous-deactiv]

Regardless of your inability to get anything done, being overwhelmed by fear of failure, and despite feeling beat by your illnesses that day; We should go to bed proud. Battling chronic illness is a feat within itself, fighting against it everyday proves your strength. Getting up each morning, and simply living, is an accomplishment. If you are laying in bed chalking up the score for the day, erase it from your mind. Because there is NOTHING easy about being sick, and you are doing an amazing job just surviving, and that in itself, is a victory in my book.

Www.whitneyhomer.blogspot.com

(via chronically--courageous)