Young woman who fell asleep on a sofa while reading books that are scattered around her

7 Tips and Tricks for Getting Through College With a Chronic Illnesses

As I lay in my bed on a cozy Sunday evening, despite the relaxed energy surrounding my loft apartment, my mind couldn’t help but wander to the upcoming week and my list of things to do. That’s pretty reasonable though, right? I mean, who doesn’t think about all their responsibilities and obligations as a new week approaches? Tonight I am preparing for my first week of spring semester graduate school. My mind feels totally scattered as I am thinking about what I will need, when my syllabus will be posted online, what kind of notebooks or binders I should use, and heck, what classes am I even taking? I hope I am prepared and show up to the right room!

Take a second and breathe.

“You’ve got this,” is what I keep telling myself.

I wracked my brain thinking of all I need to do for class tomorrow so that I am able to be physically OK for class. If you have a chronic illness, you know it’s just not as simple as showing up to class. There are several steps that one must take to be able to be successful in school.

Whether you are in high school, college undergrad, grad school, or getting your doctorate – if you have a chronic illness, you need to make sure you are taking good care of you and doing everything in your power to help yourself physically, mentally, and academically. By doing this, I guarantee it will be much easier to thrive and prosper in school.

I decided that I would share some of my major tips that helped me get through my first semester of grad school, and doing so while receiving good grades. My tips are geared towards students who are attending college, but some of these can be applied to high school, too!

Tips to getting through college with a chronic illness:

1. Talk to your professors. I cannot stress this enough. It is so important to have open communication with your professors about your disability. Now, I do not mean that you have to go into details and reveal what your disability is, but you do need to let them know that you have an illness/disability that may result in missing class some days, not always being able to meet original class deadlines, etc. Most professors I have found to be very understanding and willing to make accommodations for you…which brings me to my next point!

2. Utilize available resources for students with disabilities. This has literally been a life saver for me. Without accessibility resources at my university, I would probably not have been able to return to school when I did. Often times, schools will have programs for students with chronic illness or disabilities where students can receive a list of accommodations for whatever they are struggling with. This list is given to the professors and can help the professor better understand exactly what they need to do in order to assist the student in need. Some examples of accommodations could be taking tests in a certain room or the ability to have extensions on assignments.

3. Get a disabled parking pass. This is necessary at my school. I go to a large university that has a widespread campus, and consequently, very little parking available. I would not be able to sit through class if I had to park on the opposite side of campus, then walk all that way to my building. As someone who cannot stand for long periods of time, it is only fitting to have a disabled parking pass to help me get safely and securely to my lecture. So, if you are that person with low blood volume or a racing heart and dizziness upon standing, a parking pass could really work in your favor.

4. Wear compression stockings and always carry a water bottle. This has definitely helped me on longer days. Again, if you have low blood volume or blood pressure, compression stockings help keep the blood from pooling at your feet and in turn, help keep you more awake and alert in class. A water bottle is also key for long lectures!

5. Take a couple of online courses! Before I was able to actually attend a lecture in person, I took some online courses to ease myself into it and to work my brain, even though my body couldn’t physically handle going in to school. If you are in that position, I suggest trying a couple of online courses. They were great for me at the time and helped me to feel like I was still busy while being practically housebound.

6. Go part-time if you need to. I do not go to school full-time because I know that would be way too difficult for me right now. My health would suffer, mentally and physically. So I am taking it slow and going to school part-time. At first I was kind of embarrassed to only go part-time and not have a full-time job, but then I realized there is no need to be ashamed! Everyone is doing their own thing and we all have to ultimately do what is best for us. Don’t worry about what other people think! It’s definitely not worth our time and energy.

7. Give yourself a darn break. It’s fantastic that you are even going to school while sick and suffering with one or more chronic illness. Going to school is a huge accomplishment, and you should be proud of yourself for trying and making it to where you are. If you have to use an accommodation, use it. If you really don’t feel up to going to class, don’t go and email your professor. Don’t wear yourself too thin, because your health could be on the line. And that is first and for most your number one priority.

And that concludes my tips and tricks for going to college while being sick. I hope these help you and make you feel a bit more confident in tackling the semester.

Happy studying!

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Two people sitting on bench in black and white

What My Friends Need to Understand When I Talk to Them About My Illness

I’m up until 5 a.m. every night and I don’t know why. My heart is racing to the point of exhaustion, but yet not enough of exhaustion to sleep. I’ve had anxiety but this feels different. Ever since my medicine changed it’s just a whole shift in my personality. I calmed my anxiety… it wasn’t perfect, but I was coping. But this medication has reverted me back to my old ways. I don’t know if it’s side effects of nervousness or palpitations… and not knowing what it is is the worst part.

The cycle never ends. It’s a never ending issue of feeling fine one day and being severely ill the next. When I get well I don’t get happy anymore because I know a down is yet to come. And it’s not because I want it to, it’s that my body keeps failing me over and over again. I can’t sleep from the ear ringing and headaches that make you feel like your head has been bashed into the root of your skull. The feeling of my heart pounding out of my chest. The numbness protruding down different regions of my body uncontrollably at random occurrences. The muscle spams, the twitches, the inability to draw a straight line. The world turning black for what feels like decades every time you try to stand on your own two feet. The ray of heat making and burning red marks and the pooling of blood from your knees to your ankles. You hope no one notices, and the agony just feels like you’re going to die. That’s not even the worst part of it all. The worst part is with or without a doctor, something will always be there, no matter what I do.

That’s chronic illness, it can consume you, eat you up and sometimes even take over all you are. I’m sorry I talk about my illness to the point of people assuming I’m negative and I’m sorry I have a giant prescription case every time I go somewhere. To all the friends of a chronically ill person, please understand, chronic illness is so debilitating… we get so used to it that for many of us, it’s basically what we breath each and every day. The simple conversation about work or how you saw that guy and it was awful — that’s how simple chronic illness is to me. Simple yet intricate. Your boy troubles, your family issues, your work misery — that is what my chronic illnesses are to me. And I’m not trying to be negative or a downer, I’m simply trying to express my life to someone else just like you are with the problems you face.

Please don’t turn me away because of my illness because is so “taboo” and “uncomfortable.” Please sit and listen like you would to any other issue.

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Plastic bucket with cleaning supplies in home

When an Illness Makes Cleaning the House a Thing of the Past

I’ve never been a fan of house cleaning, but at least I was adept at it.

I could clean, scrub, mop, Hoover and dust two bedrooms, a large living room, a sizable kitchen and the bathroom in an hour and still have breath to wash my neighbors cars, do the window cleaner’s round, shop for the old lady across the road and mow the whole neighborhood’s lawns… OK, that may be a little bit of an exaggeration.

I was, I admit, a little particular when it came to hygiene and would whizz around the house like a speed loaded Superwoman. Of course, being a virtuoso of germ busting, I could catch a speck of dust before it had time to land on a newly polished surface and if there was a water mark on the table, I would throw a rage so scary and of such apocalyptic proportions that even Satan himself would be so terrified as to renounce the heathen life and turn to God. And maybe, just maybe, I did get a little carried away, especially when I used to wake my child up at 3 in the morning so that I could change his bed sheet and duvet cover. But fear not, for this was done with such skill and precision that come the morning, he would have no recollection of being hoisted out of his bed and thrown upon a chair. Instead, he would awaken surrounded by the scent of lavender blossoms and pine needle forests, instead of dead man’s feet and Gorgonzola.

Back then, my little man was a great co-conspirator in my need to purge the dirt and when it came to “tidy up time,” like Snow White and her men of short stature, we would whistle while we worked. Nowadays, I have to make an offering to the Norse Gods in the hope that they will grant him the ability to pick his underpants of the floor, least they walk to the washing machine themselves. Today, my need for a clean house is still there, but my ability remains hopelessly lost.

Thirty minutes ago, I hobbled downstairs to get the clothes from the washing machine. That was it. The result from such a simple activity left me out of breath, in pain and perspiring.

Housework consists of wiping a surface, then resting. Washing up, then resting. Plugging in the Hoover, then resting. Hoovering then…well, you get the picture. I can no longer speed around the house. I can maybe clean one room and that’s it for the day because the resulting activity will bring on a flare and have me bed bound for a week and that is no exaggeration.

Last week I went food shopping, came home, dumped the bags in the hallway and literally crawled up the stairs to my bedroom. I was only suppose to rest for five minutes but passed out for four hours. And that’s where I stayed, in bed and weeping piteously.

A triumphant day for me means changing a duvet cover (although once I’m finished, I have to crawl right into bed afterwards) or cooking a meal. I can’t attempt to even begin to clean the boy-pit that is my son’s bedroom. That requires at least two days, a JCB digger and Herculean strength.

I remember the time I attended a pain management group and how the therapist asked what would happen of we didn’t tidy the house. What was the worst that could happen? You could actually see the look of fear in her eyes as the group, which was comprised solely of women, snarled at her like rabid Rottweilers. Because it isn’t just about cleaning, it’s about loss. Not being able to tidy is a daily reminder of yet one more thing that’s been taken away. It’s about not being able to do even the most menial of tasks, which in turn, can make us feel inadequate about ourselves.

It’s about feeling “useless” and like I no longer having a defining role in my own household. It’s about feeling like a failure to be the glue that hold the pieces together. But more than that, it’s about the fact that my many illnesses feel like they’ve beaten me yet again.

I never thought that there would come a day when I would miss doing housework or think about how much we take being able to do such a simple task for granted. But I can honestly say, that I do. I really do.

This blog was originally published on More Sleep Please.

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young girl holding a bucket and standing in shallow water

The Importance of Dreaming as a Chronically Ill Adult

What were your dreams as a kid? I wanted to be a “professional cash register person” (direct quote from childhood me). A teacher, like my mom. Pile on plastic jewelry with abandon. Join the Boy Scouts (canoes > crafts). Write a book. Acquire a lifetime supply of Fun Dip. Set a Guinness World Record for most butterfly clips in one ponytail. Perform.

My current dreams? Give myself room, time and permission to heal. Read a book that transforms me. Write a book that transforms you. Return to Spain. Eat my way through Americana’s diner scene. File my taxes. Write a letter every week. Do yoga every (other) damn day.

When you’re young, dreams are everything. The world says “Great Job!” and might even put it up on the fridge underneath a blueberry-scented magnet. We’re allowed to think in big, unrealistic, imaginative thought bubbles. Polly Pocket can marry Pikachu and it’s the best thing ever. But as adults, dreams dwindle under obligation. Aspirations collapse from unsolicited opinions. And for the chronically ill, the idea of dreaming (or even mustering enough energy to think about tomorrow) is obsolete.

young girl holding a bucket and standing in shallow water
Me, back when things were a little bit simpler.

While I’m guilty of being my own worst enemy, I think it’s important to think big – whatever that means for you. Be the change. Don’t settle. Try again and again until you fail. And then try again because let’s face it: life is hard and it’s bound to happen. Have more meaningful conversations. Spend entire days (or weekends?) in your underwear. Learn a new language because your brain wants the challenge. Donate your time to a stranger. Wear mismatched socks and an armful of bracelets. Cut the crusts off your sandwich. Eat your pizza backwards. Move to a place where you don’t know a soul. Give blood. Adopt something. Start a comic book club. Meditate. Sign a petition. Call your grandma.

So very often, I find myself thinking that being sick and having dreams are mutually exclusive realities. Do you, too? Sometimes it almost seems like cheating if I can’t live a “normal” existence and yet I find myself drifting off to the abstract corners of my psyche. But aren’t the point of dreams to inspire oneself to be better, do better, act better? So perhaps having a dream is the only way to get through each day and onto the next. A way to connect, pick ourselves up and magnify whatever joy we can find.

I’ll try to give myself a break tomorrow and dare to dream a little more and worry a little less. Perhaps I will see you there.

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15 Reasons to Date a Girl With Chronic Illness

Every day, people with chronic illnesses and their partners prove you don’t need to have perfect health to be an amazing partner. Sure, you may not be able to hang out all night at a bar, and you probably spend more time in doctors’ offices than the average couple. But the challenges you endure mean you’re less likely to take the little things for granted and know from personal experience what your partner needs to feel supported and loved.

We asked our Mighty community to share the reasons why having a chronic illness makes them great partners. Of course, no one should ever date someone just because they do or don’t have an illness. But it’s important to remember that even with health challenges, you still have a ton to offer in a relationship and you are not “a burden.”

Here’s what our community said:

1. “We probably know how to have a nice time, without needing to spend a lot of money. We wouldn’t need you to plan big things. We would just always appreciate you being next to us.”

2. “I could keep going forever about how a chronically ill person is the best love you will ever find. She’s cheap to take care of, feed and romance, and never leaves the house. But she is also the most loving and intuitive girl you’ll ever find and knows what ‘in sickness and health’ truly means.”

3. “We are more perceptive to others’ pain and don’t want them, in any way, to have to feel at all like we do. Our empathy and caring nature helps to balance out our pain/anger days. We appreciate the good and know how to cope with the bad. We enjoy and don’t take happiness, love, friends or family for granted.”

4. “We remind others to be patient and to slow down… Think about it – healthy people are always on the go. They are stressed and over caffeinated. Since we can’t do as much during flares, and need to keep our energy in check on non flare days – it forces them to slow down. Take a breath or two. Relax. ”

5. “We know how to appreciate the little things in life and live every moment to the fullest! A lot of individuals complain about minuscule things, but spoonies tend to save the complaining for the really big issues (no offense).”

6. “People with chronic illnesses go through so much, and when you date someone with a chronic illness, you will also go through a lot with your partner… You will learn to support your partner better, help them advocate, and develop better listening skills. Above all, you’ll learn to love someone through intense ups and downs. This is why someone with a chronic illness makes a great partner; we can make each other better partners through it all.”

7. “I find we tend to be wise before our years and have huge hearts. It can be difficult, being with a spoonie but also very rewarding for the qualities we’ve developed through having chronic illness.”

8. “There’s a feeling that is impossible to describe, when your loved one is screaming and crying from the pain when you wrap them in an embrace and kiss their head and tell them you love them and wipe away their tears and they stop screaming and they stop crying and… they smile. Smiles and laughter mean a lot more when you date someone with a chronic illness.”

9. “We’re usually excellent cuddle buddies and are always down to watch Netflix and sit or, when we’re feeling better, go on as many adventures as we can. I cherish the moments I’m feeling fine enough to go hiking or go eat a fun dinner or go on a boat ride or a beach vacation.”

10.I may not be able to climb a mountain or go running with my husband, but I love with my whole heart and have such immense gratitude for the simple joys we experience.”

11. “We are good listeners. We know what it feels like to be alone and left in the dark, and we don’t want others to feel the same way. So we will listen to you whenever you need to be heard.”

12. “I know I’m difficult to plan with and difficult to touch sometimes, but I’m incredibly supportive. I treat people the way I want to be treated. Just ask my husband.”

13.I have an amazingly high pain threshold, a cracking dark sense of humor, look sexy as hell in a wheelchair and know my way to most of the decent local toilets, organic food places and bookstores. What’s not to love?!”

14. “We’ve gone through enough battles on our own, an argument couldn’t be strong enough to damage our relationship.”

15. “Having a chronic illness gives us a wisdom about life that you otherwise wouldn’t have — we know how to appreciate the little things celebrate the small victories.”

Thinkstock photo by Ales_Utovko

15 Reasons to Date a Girl With Chronic Illness
doctor holding papers and pen with text doctors: do these 20 things for your patients with chronic illness

Doctors: Do These 20 Things for Your Patients With Chronic Illnesses

When you have a chronic illness, you’re probably the patient who can’t be cured by a single prescription. You’re probably the one who needs referrals to multiple specialists. Your tests may not “prove” whether or not you have a certain diagnosis. You’re most likely the one doing your own research and putting just as much work into your health as you would into a full-time job. Basically, you’re the one doctors don’t always know how to treat — and whose quality of life is greatly affected by the quality of the care you do (or don’t) receive.

It’s time for doctors to understand what their chronically ill patients really need from them — so, we made it easier and asked our Mighty community to share what they’d like their doctors to do to provide them with the best care.

Doctors, here’s what you can start doing today to help your patients feel supported. The key word is listen — and remember that behind every symptom and test result is a real person who has to face the challenges of their illness every day.

Here’s what the community told us:

1. “Believe us. We know our bodies despite what the testing comes back as. If we say something is wrong and the routine tests come back negative don’t dismiss us as stress-related. We understand that for some stress does cause problems, but if we don’t think it’s stress-related don’t dismiss us.”

2. “Do further research. So often I hear the words, ‘Well, this is a rare disease, so…’ and then they trail off. I’m left siting there like, ‘Yes, I’m aware of that. Who else can do more research? Further testing? New medications?’ That’s you, doc. I guess I’d like to feel like they’re going the extra mile rather than writing me a prescription and sending me off.”

3. “Just listening with an open mind and realizing everyone doesn’t necessarily have textbook symptoms is so important to me. Also when a doctor is willing to say they do not know about my illnesses instead of dismissing me, I am always grateful.”

4. “Quit scheduling patients with chronic illnesses in a 10- to 15-minute appointment spot. When a patient is dealing with complex health issues the last thing they need to feel is pressured to say everything they need to say in such a short time period. Sit there, make eye contact with me, and actually listen to what I’m saying and not what you think is being said.”

5. “Think outside the box! Don’t keep prescribing the same treatment course if there’s been no progress or improvement!”

6. “Collaborate with me. If I’ve come in with a theory about what’s wrong with me but it’s rather unlikely, ask me what led me to that conclusion, ask me about the symptoms I have that line up with that illness.”

7. “Ask more specific questions and give us more specific guidelines for when we should call the doctor or go to the ER. I have lupus. Everything hurts all the time and I don’t know when I’m supposed to know it’s something serious.”

8. “Get their heads out of their computers trying to fill in all the sections of electronic records and look and listen. Our illnesses and symptoms don’t always fit into their electronic paradigm.”

9. “I believe doctors could better care for their chronic illness patients by imagining them as their daughter, sister, son, or friend — remembering we are real people whose real lives have been profoundly interrupted by illness. A small amount of empathy could go a long way in creating better care. Perhaps doctors could receive continuing education where they have to hear patients share their life stories and/or practice empathic listening and communication skills.”

10. “They need to work on trying to understand the disease more and keeping up to date with new findings in regards to medications.”

11.I understand doctors are under a lot of pressure themselves and may be can’t commit as much time to their chronically ill patients as they would like, but maybe they need to be more upfront and honest with us rather than just saying whatever it takes to get us out the door — for example… ‘I want to help you so let’s book in a double appointment next week,’ or ‘I tell you who is really great with this sort of thing — Dr. So-and-so — see if you can get in to see her soon.’ Just slight things like that can make all the difference.”

12. “Reread the chart before walking into the room. They try their hardest, but there’s no way they can remember everything.”

13. “Don’t just throw meds at us within five minutes of meeting us. Don’t be cavalier about side effects — some of the commonly prescribed meds can give us everything from vision problems to suicidal ideation. We may decide not to risk that, especially since there’s often very little return. Understand and work with us to find a treatment plan that works for us.”

14. “Help us coordinate everything. Many of us have multiple issues and see different types of consultants. It’d be nice to have better coordination and collaboration between everyone concerning meds, symptoms, and treatment options.”

15.Realize our pain levels go well beyond their pain chart. Understand that just because we go on living our lives and being as active as possible, that doesn’t mean we’re not in excruciating pain while doing so. Address pain at every visit and give options for pain relief at every visit. We may just change our minds about what is needed in between visits.”

16. “Don’t give up on us. I know it can be hard when you see us so often for maybe a tablet not working and such, but we aren’t doing it on purpose, we don’t like coming this often either.”

17. “[Don’t] assume every symptom is from the illness we have been diagnosed with. Something else could be going wrong… don’t assume and say it’s just fibromyalgia. I hate that. Because it makes me feel like you don’t care what’s currently going wrong with my body.”

18. “Quit overbooking your offices and have us waiting over an hour in debilitating pain. You give us an appointment time so just stick to it. It’s time management, and while I understand things happen and some patients do require longer care, inform us and tell us to come in at a later time.”

19. “‘I’m sorry. I know what you’re facing every day isn’t easy’ — what I wish they would say.”

20. “Give me hope! I always leave feeling worse then when I went in. I realize my conditions are worsening, I can feel my body. But I still need to believe I can get better or have a few better days ahead. That’s all I ask! Have a heart, I am a person.”

What do you wish doctors would do for you? Share in the comments below.

Doctors: Do These 20 Things for Your Patients With Chronic Illnesses

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