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The Struggle of Advocating for Chronic and Rare Illnesses


There comes a point in your sickness journey, whether as a patient, supporter or caregiver, where you’ve had enough of the lack of awareness for your specific condition(s). You’re left with a rarely-known diagnosis and prescribed non-FDA approved treatments that may either offer you miraculous relief or exacerbate your symptoms. The choice is yours. You’re one of the lucky ones if you have received a correct diagnosis in the first place, while some wait through years and years of being misdiagnosed. How can we stop this? Through advocating. However, the road to advocacy is a daunting, everlasting ride filled with many unsuspecting potholes and u-turns.

I recently attended a leadership conference for rare diseases and how to jumpstart an advocacy project. Unfortunately, I was not able to stay during the entire conference due to the exhausting mishaps of my own rarely-known illness (ironic, right?). But while I was there I was able to gather helpful information and toolkits on how to advocate. I also communicated with others who had rare illnesses like me, and we all had one thing in common – we are sick people who need help. My heart ached for the attendees who had all these illnesses I’ve never even heard of. Some didn’t even have a diagnosis yet. The conference offered great points, but I’ve noticed a few things that could possibly hinder the chronic illness community.


We first discussed one of our roles in getting our illnesses known – through participating in clinical trials, mostly with pharmaceuticals. A major problem with people with many illnesses is that we often react to everything. Not only that, it seemed as though they were highly encouraging us to participate in these pharmaceutical trials, which is great in a way, but it made me believe (as well as some other conference participators) that they were actually pushing us to participate, not just for new possible treatments for the patients, but for the pharmacies’ own gain.

Another roadblock for advocacy is little funds to create fundraising events. We’re chronically ill, meaning most of us are already high in medical debt due to pricey medications, hospital stays and doctor appointments. Not to mention insurance – it is expensive! Because a lot of my fellow spoonies have rarely-known disorders, they hardly receive funding from federal programs, which makes it more difficult to arrange an event with the higher-ups.

Going along with the lack of funding, traveling to conferences related to your certain illness poses difficulties. When a popular non-profit group releases an event or conference date, chances are the location is over 500 miles from your house and many of us cannot afford plane tickets, bus fares, hotel rates, etc. when it comes to traveling long distances. Because the locations are so far away, patients are not able to advocate for their cause.

So, what can you do as an individual to raise awareness for your illness or disease for little to no cost?

1. Work with non-profits to request an awareness month proclamation for your illness or disease from your county or state.

2. Print out brochures explaining (with accurate information and sources)
your illness or disease and take them to local doctors’ offices and hospitals. Hand them out to the doctors or nurses or even ask to leave them in the waiting room!

3. Request to write articles for your local newspaper or bulletin board explaining your illness or disease.

4. Utilize online fundraising tools like GoFundMe to raise funds to send to your non-profit of choice.

5. Write! Write! Write! Write articles or blogs and share them on social media! Twitter, Facebook, Blogger and more.

In conclusion, it is difficult and time-consuming to advocate for your cause. But the payoff is absolutely worth it! If you can educate just one person on your advocacy journey, your dedication will been fulfilled.

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Thinkstock photo via Madedee.




The Dos and Don'ts of Dating With a Chronic Illness


Dating when you’re chronically ill is pretty much just like doing anything when you’re chronically ill: you’re usually held to the same standards as a healthy person and have the same things to worry about, plus the hundreds of other unique challenges chronic illness throws into the mix. Here are some “dos” and “don’ts” of dating with a chronic illness to keep in mind:


Remember you are extraordinary: You’re awesome! Sure, healthy may not be a quality you list on your dating resume, but come on! You’re still you! It’s totally OK to let your illness be a part of your identity, but don’t get caught up and forget you’ve got a lot more going for you. Whether it’s your sense of humor, your compassion, or your incredibly nerdy and extensive knowledge of the immune system (nerdy here meaning awesome of course), you’ve got it going on! You’re still a person even though it might not feel like it at times. Try not to get bogged down in worrying about your illness affecting a date or a relationship.


Expect effort: This will go with the second “don’t” below, which is don’t expect perfection. While it’s unfair to expect perfection from anyone in anything, do expect effort, and consistent effort at that. In any relationship, effort needs to be coming from both parties: effort in communication, caring for each other, understanding each other, planning time with each other, and so on. But effort is especially important to people with chronic illness and is something I think I (and I suspect I’m probably not alone) have let people be kinda skimpy with in the past, especially regarding my needs that come from my illnesses. I feel like a burden already, just by existing as I am, because that rules out a lot of activities and things, so I kind of let people get away with not putting in effort as far as caring about how my health is as much somebody I’m dating should. Somebody dating you, once you’re comfortable enough to open up about being ill, knows to some degree what they’re getting into. And somebody who cares about you will make an effort to learn more, to try to understand and to continually put in the effort to keep you as healthy and comfortable as possible, without ignoring your other needs that are non-health related.

Use your unique gifts and talents to show your partner (or potential partner) how much you appreciate their efforts in care and understanding: Even if you can’t show your partner how much you value them in more typical ways, you’re unique and your partner likes you because of that. Use that uniqueness to think of cute gifts or date ideas you can handle. Even just a letter or verbalizing your appreciation means so much! Expressing love and sincere gratitude seems to be something our society lacks that people with chronic illnesses realize is important and valued because life is scary and short and nobody knows that better than us!

black and white photo of woman and her boyfriend smiling at each other

Tell your partner what you need – illness-related or not: As I said above, in the past I’ve ignored my illness-related needs when possible to try to avoid burdening my partner. I’ve also been guilty of ignoring my normal relationship needs, things like attention and affection, because I feel like my partner dealing with the weight of my illness and those needs is obviously different than what a normal girlfriend needs and that asking for more, even if I really need something and even if it’s something that would be present in a more “typical” relationship (something like attention that’s not focused on my health for example), is asking too much. Which is so ridiculous! The right person will not ever see anything you need as a burden! They are there to meet your needs as you are there to meet theirs, when capable, which goes for both of you. You’re not asking for too much.


Settle: Do not stay with someone because you don’t think you’ll find anyone else who will put up with you being sick. Do not stay with someone because you think your illness makes you undesirable to others or that it makes you “too much.” You deserve to be happy and you do not deserve to be sick. It’s not your fault. The right person would never hold that against you and your right person exists and will make you incredibly happy. Be strong enough to remember what you deserve.

girlfriend and boyfriend standing on a sidewalk outside a home

Expect perfection: As I said above in the “Dos,” expect effort, but expecting perfection is obviously an unrealistic standard for anyone. What matters is that the person is willing to admit if there was a wrongdoing at some point, listen, learn and communicate back with you so you can understand what their point of view is. What matters is that the effort is there, even when one of you falters. What matters is that you want to keep moving forward and are both willing to make that happen in any given situation.

Hold yourself back: If you are comfortable enough with a person to talk to them about your illnesses or about anything, do it! If they’re the right person, you’re not going to be too much for them (or too little). Sure, it may definitely be overwhelming for someone new, but they’ll stick it out and learn and grow because of it and because of you. So don’t hold back.

Force yourself to talk about anything you’re not comfortable with: That being said above, if you aren’t comfortable enough with a new person to disclose information about your health or about anything really, then wait until you feel ready. Don’t force yourself into anything. Wait until the timing feels right! The right person will be patient with you.

Think you hold your partner back: The person who really likes, loves and cares for you won’t ever feel held back by you. Again, your illness isn’t your fault, and again, you are still freaking awesome. Please remember that! Your partner is with you for a reason, and if they felt held back they wouldn’t be with you and they wouldn’t be right for you. Plus, capability for physical activity is by no means the most important feature of a person.

boyfriend carrying his girlfriend on his back on her graduation day

Go under-appreciated: Don’t forget Do #1! Just because you’re sick and may not be capable of some activities healthier people may enjoy does not mean the things you bring to a relationship should go unappreciated. Don’t forget that you are incredible and deserve to have all that you contribute appreciated. I think this is especially important for people with chronic illnesses, because for us, everything we do takes a lot out of us, and people tend to forget that. In a relationship, we’re constantly making choices like spending time with our partner instead of sleeping as much as we should, or walking a bit more than our bodies are telling us we should, and things like that. But the consequences of all of those choices aren’t visible to anyone else, and even people close to us like our partners can forget how much we give in a relationship, even though it might not seem like much at times. It’s important that you get the recognition you deserve because every one of those choices is a demonstration of how much you care for that person and value your time with them and they need to remember that.

Dating is difficult for anybody, and then you throw chronic illness into the mix and it can become downright labyrinthine! Stay focused on what you want and deserve in a partner and a relationship. Don’t ever devalue yourself because of your illness. You deserve someone who will always support you, make you smile and show you the love you want and need!

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You Know You Have a Chronic Illness When...


When living with a chronic illness, seemingly trivial tasks or things healthy counterparts do can often seem like insurmountable challenges for you. While I was at the beach with my children on a warm summer day, my body started telling me I needed to go lay down. I know when this happens and I am away from home, I need to pack my kids up immediately and get home to rest my body. We had only been at the beach half an hour, so it was no surprise my children were disappointed to leave so soon. I felt like I had let them down, but knew I had done my very best and couldn’t let myself get discouraged. As I was driving home, these thoughts came to my mind. I wrote them as a sort of humorous way to cope with the stresses of chronic illness. I hope you can share in and enjoy the humor that life sometimes throws you.

1. The kids’ “quiet time” is actually your nap time so you can rest your body. Unfortunately for my children, there is also more than one quiet time per day.

2. Planned outings often get cut short, leaving your children to ask why others get to stay longer.

3. Your kid’s response to “What is your mother’s favorite thing to do?” is sleep.

4. When your friends want to go to St. George and you live in Salt Lake City (a four-and-a-half hour drive), you look at how much flights cost so you can join them.

5. Reading books and writing articles become your favorite pastime even though you still don’t know what an adjective or verb is.

6. Your spouse carries heavy bags and does hard chores because he knows how much your body will hurt if he doesn’t. He also knows how proactive you are and is constantly reminding you to pace yourself, which is hard to do.

7. Your kids’ friends often see you laying in your bed with your leopard printed blanket, resting.

8. You take more than a couple hot baths a day.

9. The gym daycare discounts your punch card because they know you only work out for 15 to 20 minutes instead of the hour they charge.

10. Going to the doctor scares you and not because of the needles, but because you’re afraid they will find nothing wrong with you.

11. Your medical vocabulary is quite excellent.

12. When your spouse doesn’t know where to find you, he knows to look in your bed or the bath first.

13. Walking to your mailbox while pushing a stroller and then back up the big hill is quite a feat!

14. Heated car seats are a huge blessing!

15. Your kids are dang good at cleaning up and taking care of themselves.

16. You eat healthy foods your grandma thinks are cardboard, but you secretly like.

17. You hate the cold, but despise the heat even more.

18. You have a schedule for chores, but know it probably won’t get done, and you have to be OK with that.

19. You want to do fun things that people your age don’t think twice about, but know you’ll pay for it later. You do them anyways because part of caring for your mental health is to live.

20. Your kids pray for you and always tell you they wish you could get better soon.

21. You are making an oasis in your backyard because you know that’s probably as far as you’ll travel, at least very often.

22. Your house is decorated simply.

23. Your children are pretty compassionate people.

24. You are grateful for simple and small things in your life.

I believe in you. I believe you can make miracles happen. And I believe that peace (true inner peace) is the answer.

This blog was originally published on Meg’s Grace.

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Thinkstock photo by vladans

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10 Things That Can Inadvertently Hurt People With Chronic Illnesses


When trying to support someone who has a chronic illness, there are some little things that might be doing the opposite. It can be hard to know how to support a loved one who is chronically ill, and if you are trying to support, your heart is in the right place and that is the most important thing!

I’ve been sick and in pain my entire life, so I’ve encountered these over the years. I want to make it clear that I’m extremely grateful that people are supportive and I’m not upset at these things. I just think it can be helpful for both the people who are ill and are looking for ways to express what is not helpful, and for people who are wanting support others who are ill.

1. Commenting that someone who is sick looks healthy is usually not helpful. Keep in mind that many people have faced doubt from doctors, have been told it’s in their minds, or have been told they are exaggerating. So, when they hear that they don’t look sick, those experiences taint that with the feeling that their pain or illness is being invalidated.

2. Pointing out that someone looks terrible is also not very helpful. It’s highly likely that the person knows they look sick, and it can make them feel self conscious or hurt.

3. Suggesting herbal remedies and alternate therapies is generally not helpful and in some cases can actually be dangerous. Certain herbal remedies can be deadly, depending on the person’s unique health issues. Certain immune boosters are helpful for people with functioning immune systems, but can actually cause immune deficiencies to worsen. Of course, some people may be receptive to alternative ideas, so I just suggest that you ask first. Ask them if they are interested in hearing about some herbal remedies, or other treatments. Also make sure to add, if they are interested in these remedies, that they should talk with their doctor first. Even if two people have the same disease, their bodies chemical makeup will be different.

4. Judging the medications a person takes is also not very helpful. It’s a very personal decision, made between patient and doctor, and there will be reasons they have decided for or against certain medications. Reasons that can be very complex and be based off of blood tests, allergies, the illness involved and many other things.

5. Only talking about someone’s health can become very sad and can make the sick person feel like other people are defining them by their illness. This tends to happen a lot when the person who is chronically ill doesn’t work. Health becomes the main topic. Get to know more about the person’s interests and share things about yourself.

6. Constantly asking someone who is chronically ill if they are back to work yet can be disheartening and hurtful. Many chronically ill people will never be able to return to work and being asked that question often is a painful reminder of that fact. Most people who have had to stop working due to illness are very upset they had to stop working. It can cause an identity crisis, loss of socializing with coworkers, and the loss of feeling productive.

7. Asking if a chronically ill person is “better yet” can make them feel like they have not been heard. It’s usually not malicious, when this question is asked, but it can feel very invalidating. Chronic typically means that it is not going to get better. I think people have a hard time with that because it seems so unfair and they want the people in their lives to get better. It’s natural to want that.

8. Getting upset if the sick person has to cancel plans can make the person who had to cancel feel guilty for being sick. I know it sucks when plans are cancelled, but it also sucks for the person who was so ill that they had to cancel.

9. Saying to others that “so-and-so does nothing” can be hurtful. Treating and taking care of a chronic illness is hard work. It is exhausting, frustrating, painful and involves many appointments and often harsh medication.

10. Saying things like “You’re sick again?! You’re always sick!” can add guilt about being ill, and that’s really hard because it’s something we have zero control over.

If you’ve read this and are looking to support someone in your life who is chronically ill, thank you. You are an incredible person and your caring will make an enormous difference.

If you are chronically ill and are trying to help show others info about what can inadvertently be hurtful, I hope this helps you start the conversation.

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Thinkstock photo by Kosamtu



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What I've Learned About Managing a Long-Term Health Condition


It can be upsetting to find out that it’s going to take a long time to recover, especially when there is the potential that you could be living with these symptoms for the rest of your life. It’s not like a broken bone where in six weeks you will be repaired. For me, my illness is invisible. I look like a normal teenager who likes going out with her friends, playing sports and going to school. I look completely healthy. I think that’s what makes it so hard sometimes. I don’t have a cast people can sign, so in the past I have been asked if I’m making the pain up.

Luckily, my doctors never gave up on me. It was four years before I got a diagnosis. I had test after test, procedure after procedure, yet they never could find out what was wrong. I had so many symptoms but nothing showed up. I was a “medical mystery.” I was reassured by the fact that medical professionals believed me.


Sometimes I struggled to get through daily activities because I end up exhausted and in agony with swollen joints and my body just gives up, meaning I can’t move. In general, with lots of practice and pacing, I am able to manage my symptoms so it rarely gets to this. It can be hard. Having to wake and make sure I’ve eaten before I take my medicine, even when I’m in so much pain I don’t want to eat because I feel sick. Having to be on constant alert. “Am I going to pass out?” “Is my blood circulating to the whole of my body?” My condition tires me out, yet I want to carry on with everything I do because I am scared of being labeled as “different.”

As time goes on, you start to be able to manage and recognize your symptoms. This time last year I was fainting six times a day, whereas now I haven’t fainted in five months. I listen to the warning signs my body gives me. I think this is important for anyone, chronic condition or not. If you’re tired, take a break. Your body will thank you.

Get support from family and friends. You cannot face this alone. Just small reminders of how well you are doing, reminding you to take your medicine, visiting you in the hospital. These can all make a difference. Facing the pain should not make you feel alone. My family and friends make me smile, support me and tell me how proud they are.

Talk to people. I try and tell people how I’m feeling. It helps them understand if I can’t do something. Telling the doctors exactly how you feel is also important to ensure they are able to get the full picture.

Look to the future. One of my biggest motivations has always been to get to university. This has meant that even when I don’t feel like it, I have attended school. Even if the future is just tomorrow, I set a goal of getting up, going out with friends and getting through the day.

It is so hard living with illness, short-term or long-term. Everyone has different experiences, but it can be possible to carry on with normal activities, and I have always tried to do so.

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Thinkstock photo via brickrena.




Why Some of My Favorite Memories Are From Hospital Stays


When I was at the Mayo Clinic for seven weeks last year, I went determined that I was going to meet an adorable guy who was also riddled with life-threatening illness, and he was going to be the silver lining to my travel-out-of-state-for-medical-care-because-I’m-literally-dying hospital stay.

But when I got to the Mayo Clinic, I felt like I was the only person under the age of 70 who was being treated there.

I felt like I was the only young adult in this faculty, possibly even in my side of the hemisphere, who was dealing with my type of health issues.

That was until, one day in the infusion waiting room, I met Rachael. She had a big brown eyes and an even bigger smile. She was two years younger than me, super spunky, loved dogs and was a fellow IV-dependent medical mystery.

From the moment we met, an instant friendship was formed.


We would schedule our IVs on the same day, ask to share a hospital room and just spend hours talking, laughing, walking the halls, taking selfies, playing cards, sharing sick kid “battle stories,” listening to music and playing with Play-Doh.

One day we even got our favorite nurse to do an “IV photo shoot” with us to help pass the time, as our IVs were a minimum of two to three hours long. Those pictures are still some of my favorite pictures in existence!

She was often my stress relief during one of the most stressful times of my life.

There is one day in particular I will never forget…

Rachael told me “there was this male nurse who was working that day who was super attractive, and she hoped he was going to be the one who put in her IV today, because he was hot enough to be on ‘Grey’s Anatomy.’ And I just had to see him.”

For the first time in a long time, some “sick chick luck struck,” and Rachael got the hunky male nurse as the one to put in her IV. I was sitting on her bed already, 10 minutes into my IV.

And as he hooked her up, we both just stared and shamelessly flirted with this male nurse.

As he turned around to grab gloves, or grab an ultrasound machine, we would attempt to mouth out words to each other, trying to express how good-looking he was, without either of us getting caught by him.

After he left, we both burst out laughing and totally agreed he was hot enough to be on “Grey’s Anatomy” (which, to no surprise, was our shared favorite TV show).

We of course started talking about “Grey’s Anatomy,” and then, all of the sudden, Rachael got this mischievous look on her face, checked her phone calendar, and exclaimed, “Yes! I think Dr. Yang is working today!”

I looked at her confused, and she told me, “There is a nurse who works here every Wednesday who looks just like Christina Yang from ‘Grey’s Anatomy.’ She is basically her twin. You have to see her for yourself!”

So we both grabbed our IV poles, went into the hall and began hunting the whole ambulatory infusion center for “Dr. Yang.”

The nurses kept on asking us what in the world we were doing, and Rachael would just smile and sweetly respond, “Oh, we are just getting our exercise for the day!”

Little did they know, we were two girls on a mission.

After 10 minutes of walking around and dragging our IV poles, we were about to turn the corner to go to the nurses’ station, and Rachael stopped, grabbed my arm and excitedly whispered to me, “Look! Look! I found her! I found Dr. Yang!” I peeked around the corner, and I just about died laughing.

I saw a woman who looked exactly like Christina Yang from “Grey’s Anatomy.” Same face, same facial expressions, same mannerisms, same everything!

So we sat there in the middle of the hall, trying (and failing) to silently laugh. We were literally laughing so hard, tears were coming out of our eyes and we had to hold on to our IV poles for support.

The nurses stared at us in entertained and confused wonder, like they were debating if we were just having a strangely good time in the hospital, or if the combination of dehydration and malnutrition had finally caught up to us.

We somehow managed to get ourselves back to our room. Then we collapsed on the bed…joyfully exhausted.

Afterwards, we both looked out the window of our fifth-floor room and stared in complete awe. Because right before us was one of the most gorgeous sunsets I had ever seen in my life.

As we were in a hospital room, hooked up to life-saving machines and physically felt like absolute garbage, we gazed at the sunset and talked about how much we loved sunsets. Because sunsets are a daily reminder that we are so lucky to be alive, and we were so lucky to get to continue to live, despite our bodies that continually kept trying to hurt us.

This may seem like a small and insignificant memory, but that was honestly one of my favorite days of my life!

Some people might think it’s impossible to feel joy in a place that’s full of so much pain. But I’ve honestly met some of the happiest people and made some of my favorite memories while I’ve been trapped in a place I truly didn’t want to be, and fighting for a life I wasn’t quite sure I’d have.

I think when you’re in that situation, when you’re so sick it seems as though hospitals and doctors’ offices are your second home, when your life feels full of more bad news than good…it makes you 13 times more grateful for every good moment you get. Because you truly will never  realize how many gifts life gives you on a daily basis until life shows you it can take those gifts away.

Until next time. Stay strong. Appreciate every day, and always smile on!

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Thinkstock photo via Siri Stafford.


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