25 Dysautonomia 'Veterans' Give Advice to the Newly Diagnosed


Very often in our support group, we go through large growth spurts. Sometimes it happens that we are adding a bunch of people who have had dysautonomia for a while and are simply finding our group for the first time. A few weeks ago, we happened to add a lot of those who were newly diagnosed. We asked some of our “veterans” to share with our “newbies” the best advice they had that they wish they had been given at the beginning of their diagnosis journey. Here is what they came up with, and we think it’s a fabulous list of some well earned “sage” wisdom from seasoned veterans:

1. “Things will get better with time and knowledge.” – Amanda A.

2. “No two people’s journeys are alike… don’t compare yourself to others. You know your body better than anyone.” – Dani F.

3. “Keep advocating! Take one day at a time.” – Maryellen W.

4. “Make sure your specialist listens to you and knows your symptoms. Not all treatments work for everyone.” – Bette D.

5. “Work to find your primary cause of your dysautonomia.” – Todd S.

* Note, we did point out here that not everyone is able to find their root cause, and we felt that was important for those who were newly diagnosed to know. We still loved this comment, because so many of our veterans have been able to find their root causes, or to be lucky enough to work with doctors who had a lot of patience and the willingness to refer out to other specialists in an attempt to identify the root cause, and it can be important for those still looking to consider when to move on to another doctor who might be more willing to help them. We also posted the known underlying causes of dysautonomia.

6. “I agree that we are all unique and have different journeys. I would also add to keep track or have a log of what you go through daily and write a list of things you want to discuss with your doctor just in case you forget that day. Writing lists helps me so much. Also, it is ok to rest and take care of yourself. Lastly, it is ok to switch doctors if your doctor isn’t helping or understanding.” – Laney R.

7. “Listen to your body. Learn its ins and outs and signs. When your new it can feel as though you’re barely treading water, but you’ll get there.” – Katie T.

8. “Having lived with it for almost three years I’d say — what works for some does not work for all. I’ve been advised to do so many different things (give up gluten, etc… turns out I have gastroparesis and gluten is one of my only safe foods along with soup with clear broths and Jell-O and crackers, etc). Do 1 thing at a time to see if it helps and don’t feel pressured to do it just because others are.  Oh, and goodness… be kind to yourself! If someone you loved had these conditions… you would be overwhelmed with compassion for them. Turn that inward!” – Melissa S.

9. “Trust your instincts. If you think you’re bad enough for an ER visit, then go! A little saline never hurt anyone… and for us, it can really be a lifesaver.” – Laurie H.

10. “Oh-so-many times I look back and wonder why I refused an ambulance because ‘I didn’t want to make a fuss’ — if I’d only been more ‘fussy’ I probably would have gotten a diagnosis a lot earlier!” – Claire M.

11. “Food can be your best medicine or your worst poison. Listen to your body. Two of my favorite safe foods are homemade chicken stock and white rice, because together with a little time and effort, you can make amazing risotto. It’s four whole ingredients and it’s an absolutely amazing new flavor and texture. Find ways to love the foods you can eat, if you’re still able to eat at all. (I wanted to be a chef before this, so I’m a little food oriented.)” – Mariah M.

12. “Stay hydrated. There is a long-held basic rule of thumb for daily hydration. It is: Half your weight (in pounds) is how many ounces of water you should consume every day.” – Cindy S.

13. “When reaching to the back of the refrigerator, make sure you have long arms, or your head clears the side of the fridge. Also, make sure your head is outside of fridge before standing up.” – Lisa C, a.k.a. our resident comedian)

14. “[POTSies] move slowly when getting up from laying down to sitting, and sitting to standing. Avoid bending around, and if you do, stand back up slowly.”- Cindy S.

15. “Drink your water each and every day. And agreed — listen to your body (and sometimes close your ears to everyone else around you when they make comments.). You can pay a dear price for overdoing it, and many people are not going to get that.” – Deb R.

16. “You will have periods of bad days but I promise there will be good days, too! Find your new ‘normal.’ You will figure out what helps and what hurts, remember that and trust yourself! Rest when you need to! Push yourself when it’s important as long as you will rest afterwards. It’s a balancing act sometimes! Listen to your body, trust your instincts, and give yourself grace! You are a fighter! It’s ok to have have bad days, just don’t ever stop fighting!” – Beth C.

17. ”Managing this is a series of small victories. There may be the occasional breakthrough for some, but mostly it is a compilation of successes that is found over time. For example, raising the head of your bed may not seem to make much of a difference. Either compression stockings or extra salt and water. But combined it may make some difference. Again, my point is much of this is a series of small victories that accumulate to being a better managed you.” – George J.

18. “Slowly increase your salt and water — way beyond what you think is normal or healthy (with the supervision of a doctor). Measure it obsessively. Once you have the dose that helps, never miss a single dose. Also keep an eye on the barometric pressure — that can mess with you. If you feel unwell for ‘no reason’ I bet you it’s the weather.” – Claire M.

19. “My sage advice is this: keep a symptom diary. In the beginning, the numbers probably matter, but as a veteran I find it isn’t the number as opposed to the symptoms I pay attention to. I rarely take my vitals much these days. Medication management can be hard, and it can be a trial by fire to find the right meds at the right dose and the right combo, and you have to find the right doctor for you for that process! Flares can be hard, really hard, and as an EDSer, my good times are spring and summer and my bad times are fall and winter, and my winter flares throw me off every year. I’m lucky to have a wonderful and amazing local team of doctors and out of state experts that took me years to build, but I reap the benefits of that hard work now, and that does include identifying my underlying cause of dysautonomia. It was an uphill battle in the beginning, but it did get a lot better with time, and I am glad I advocated hard for myself until it did!” – Alexandra Z.

20. “When you think, ‘I can’t handle this,’ know that deep down inside a part of you can. That part might seem small, but it’s the flame of motivation that never goes out. Ask for encouragement or support on this group on those days. This holds true for most humans… we all have rough days. ‘Be kind, for everyone you meet fighting a hard battle.’ But it’s especially true with invisible illness.” – Beth G.

21. “It’s a roller coaster, both mentally and physically. I have five family members with it and we’re all a little different even though we have similarities too. Things that help me beyond meds: a shower chair, my wheelchair for going out, fluid loading (500 mL in less than five minutes) right before I do something that could make me worse, my heavy duty compression, meditation, and self-hypnosis. Good psychological support too. I know for me when it first got really bad, I didn’t want to go to seek that help because I had had doctors tell me in the past that my condition was psychological and I felt like I was saying they were right if I went to someone. But eventually I realized that I was depressed. That it went along with being sick and was normal. Finding someone who specializes in chronic illness and pain can be very helpful in gaining coping mechanisms.” – Erin S.

22. “Definitely that you need to do your own research and not be afraid to push your doctor to try different treatment if something doesn’t work for you.” – Julie R.

23. “Listen to your body. When you need to rest/sit etc. make sure you listen, even if you have to sit on the floor. You may look strange to others but sitting on the floor is better than hitting it. Also, it’s so important to drink those fluids. Have both plain water and electrolyte drinks. And don’t be afraid to advocate for yourself, and try different specialists until you find one that works for you. Don’t stay with someone just because other people have liked them. We’re all different in terms of personality, what we are looking for in a doctor, as well as our symptoms. You’re strong, and you will get through this. On tough days (and good ones) we are here for you.” – Emi M.

24. “Always be prepared when leaving house. Salty snacks and fluids!” – Jennifer O.

25. “Listen to your body and remember doctors don’t always know everything. Don’t be afraid to fire a doctor and find a new one if your current one isn’t treating you right.” – Chassity F.

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Why I Couldn't Stop Laughing When I Passed Out in My Kitchen


As I sit in my bed in my usual spot surrounded by my comforts of water, meds, and my laptop, I think back to my life before this illness. I loved to be outside, I loved my job, and spending time with my family and animals. I was an adrenaline junkie and would try just about anything once. I loved to laugh and go out with my friends and see new things.

Then one day it all changed. Walking into work I felt dizzy, out of breath and suddenly I fell over. This ended up being a severe tachycardic episode. Luckily my work just happens to be a doctor’s office. This episode eventually led to my diagnosis of dysautonomia. I convinced myself that I could fight through my symptoms. I thought I could get through anything. Mind over matter. I didn’t want anything in my life to change. I did everything the same and tried to ignore my symptoms. Then I think back to when it all hit me. That I had a incurable chronic illness. That this was my life. My new norm.

I was home on my lunch break and talking to my mom when I suddenly passed out on my kitchen floor. All my poor mother heard was “I feel a little dizzy,” a loud thump from my body hitting the floor and my phone crashing on the linoleum. I wake up to hear pounding on the door and suddenly I’m surrounded by a policeman and three EMTs. I slowly inch my body off the floor to lean against my kitchen cabinet as they begin to ask questions about what happened. And as I try to explain my condition and that this was normal I couldn’t help but laugh.

Here I am, a healthy-looking 31-year-old woman, passed out on her kitchen floor. And this is just another day for me. Most people would get rushed to the ER to be evaluated by a doctor. Not me. This is just something that happens and will continue to happen. My new norm. And I couldn’t stop laughing. After I stopped laughing I told the team thank you and that I will be OK.

My husband walks in and tells the EMTs that this is normal for me and that he will take care of me from here. As they walk out, my husband and I look at each other and couldn’t help but laugh. To explain to people that passing out is normal just sounded insane to us, but that’s our life. We realized in that moment that sometimes you just have to laugh.

When life throws you a curve ball like a chronic illness, you just have accept it and try to smile your way through it. Don’t get me wrong, there are hard days. Days I’m curled up in a ball in bed all day crying from the pain.

But on my good days or sometimes just a few good hours, I try to get out, spend time with my family and laugh. Take those good days and make the most of them. Sometimes for me it’s spur of the moment because I never know when my good days are going to be. My advice is to take advantage of those moments, even if it’s just to go see a comedy or playing a game of cards with friends. It can help you get through those bad days. Laughter truly is the best medicine.

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6 Tips for Your First Year of College With a Chronic Illness


I went to the school clinic a while back to get something for an ear infection. The nurse asked me the usual questions:

“Do you drink?” No.

“Do you smoke?” No.

“Do you do drugs including marijuana?” No.

“Are you sexually active?” No.

She was surprised because without a parent there, there would be no reason to lie to the school nurse. The nurse looked up at me and gave me a funny look, “You don’t do any of those?” No, I smiled sadly.

It’s ironic that college is supposed to be one of the best times of your life. Students are supposed to enjoy new freedoms, take risks, and begin to really live their lives. But not me. I have dysautonomia.

Transitioning to college was super difficult for me. Learning to take care of my body meant no drinking, smoking, or drugs – no typical “college fun.”

Here are a few tips to help your first year of college if you have a chronic illness:

1. Have a support team. Siblings and parents can help you through a lot. You’re going to need friends, too. I was lonely at the beginning of school so I made a support group of friends from high school, family friends, and my family until I made friends at college who became my new support group.

2. Find your limits. Just because you are sick doesn’t mean you can’t have fun. It just might mean a different kind of fun than “college fun.” Most medications rule out the use of alcohol and other drugs like marijuana. Personally, I can’t stay up too late. In the beginning of school, I stayed up to 11 or 12 every night. I learned that wears you down very quickly. Now, I go to bed around 10 every night, and I feel a lot better.

3. Pick the right friends. In the beginning it’s hard to find friends, and once you do, sometimes they aren’t the right friends. Yes, it’s cool to hang out with people who are really having a college experience, but eventually you will feel left out. I felt like I was judged by my friend’s new friends who didn’t know or care about why I wasn’t drinking or smoking. When this happens, it’s OK to distance yourself and find new friends. Remember friends aren’t people who push you to do things you are uncomfortable with.

4. Know you are going to repeat yourself. No one is going to remember your illness so you are going to tell them multiple times. People are going to want justifications for why you aren’t going out or drinking with them. The hardest part about this one is that no one knows what dysautonomia is and it’s not a quick easy answer. So, a lot of people just end up knowing you have a nervous system disorder and you can’t drink, without knowing the correlation.

5. Don’t skip class and don’t procrastinate on your work. For people whose health is more guaranteed, they might be able to skip a day. But for us, that one day might be the only day in a week that you feel alright. You need to save those skipped days for days when you can’t get out of bed or for when you are so sick that you can’t walk on your own. I try to do homework every chance I get just because I know later I won’t be able to. I can’t stay up all night to write a paper that I procrastinated on so I do it in chunks days before so that it gets done on my time when I feel good.

6. Stay close to home. I know it sounds constricting to go to a college so close to home but it has really helped me. I can call my parents at any time because we are in the same time zone. They can come up when ever I need them to. Honestly, when you are at college it feels like such a different world anyway, so it doesn’t seem so close.

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20 People Describe What It Really Feels Like to Live With Dysautonomia


Dysautonomia is a difficult condition to explain to friends and family, especially since symptoms can vary from condition to condition. You simply “don’t get it until you get it.” Dysautonomia Support Network asked our members, “What does it feel like living with dysautonomia?” in the hopes of generating responses that were transparent, honest, and helpful for caregivers, family members, and friends. Their answers blew us out of the water with how much it resonated with our community, regardless of whether they had POTS, Ehlers-Danlos syndrome, Chiari malformation, mixed connective tissue disease, or another condition. We hope that these answers will help foster a conversation with your loved ones one what life with dysautonomia feels like for you.

1. “It feels like a roller coaster you can never get off of. Being judged by the world for looking normal when inside you are anything but.” – Susan B.

2. “It is not ‘You don’t have to work!’ Instead it’s more like ‘I can no longer feel productive.’” – Beth S.

3. “Like you’re a prisoner in your own body (especially with not being able to drive since my spells seem to kick in then). Never knowing what you will be able to do one day and not be able to do the next day without problems.”  -Beth P.

4. “It is like living in an awful TV soap opera. You think things cannot get any worse, or you have seen everything, but then a whole new level of series of events happens. The worst part is that you do not get a break; there’s no option of changing the channel or turning the television off. There isn’t even a pause button. You just have to keep going through it all with no breaks. It is exhausting and drains you in ways you did not even know were possible.” – Jo C.

5. “Living with dysautonomia is like running full speed on a treadmill while standing still with lead weights tied around your ankles.” – Ariel A.

6. “It feels like you’re stuck in an unfamiliar body that’s always throwing a temper tantrum. You can’t control what your body does. You try to tame it, but some days you’re just too tired to fight and give in. Other days you’re determined to show it who’s the boss.” – Arianna L.

7. “Standing is a 50/50 shot of whether it’s all going to ‘go black’ for a few seconds, and every time, I swear, every single time I have a moment of fear my vision will never come back! Once it does, it’s a 75 percent chance that I am going to wobble for a few seconds and a 25 percent chance I’m slamming into a wall because I didn’t quite catch my balance! I’m used to it…my family isn’t.” – Alexandra M.

8. “I’ve described it to people as waking up with the flu, running a marathon in 100-degree humid weather, working a 12-hour shift unpacking the truck, and then running another marathon.” – Yasmin W.

9. “It’s like when you try to do too much on a computer and have too many things things open at once. Your first warning is when it freezes and then you can simply shut down and restart and be back to work quicker. Or if you continue to push and keep going, it might crash or overheat and it’ll take a lot more effort to get it functioning again. Or you simply forgot to plug it in and the battery’s dead again. Meanwhile, all of your friends computers never seem to malfunction, and it makes you feel like you’re doing something wrong. You apologize over and over again before you finally give up and start making excuses for why you couldn’t finish something. You feel like you’re always repeating yourself when saying, ‘Yes, I really do need to get it fixed, but every person that’s look at it has told me that there’s nothing more they can do and I shouldn’t try to do so much at one time.’ Just like humans, computers have their good and bad days. We just have to roll with the punches and solve problems as they arrive. Even the strongest antivirus can’t fix all of our computer’s problems, just like all doctors/medicines can’t solve a person with dysautonomia’s problems.” – Allie L.

10. “It feels like I wake up every day in some strange body; not the one I was born with and lived in for 46 years. It’s like I woke up one day in a body that simply doesn’t work.” -Tina F.

11. “It’s hard to describe the feeling of your body constantly running a marathon. I can wake up, feel pretty good, make a cup of coffee, and by the time that coffee is made, I’m getting hot flashes, dizzy, nauseous, shaky, heart racing and pounding, feeling really weak, all my muscles hurting all at once, and ending up sitting on the ground trying to catch my breath with tears in my eyes. It straight up knocks me off my feet. It is like your body on the outside is a beautiful calm, sunny day on a beach while, on the inside an Ef4 tornado is hitting with no warning. Nobody can see the violent storm going on inside, but you definitely feel it.” – April W.

12. “I guess one word that would sum up all the symptoms is debilitating. It is a life-altering condition that makes normal, everyday activities very challenging. I often feel like my body has given up and no amount of sleep, healthy eating, supplements, working out will make it function properly. While the condition is not a blessing, I think a blessing could come out of it in that I will be a better version of myself for having gone through it.” – Corinne S.

13. “One minute you feel good with lots of energy. The next minute you feel like you’ve been hit by a mack truck, and really sends your body into a tail spin. It takes a while to recover.” – Melissa S.

14. “Some days I feel like I did an Iron Man hungover, carrying a Fiat on my chest.” – Maeva C.

15. “The staff at the local Walmart have come to recognize me and when they happen upon me in an aisle and see me trying not to pass out, or having already passed out, they bring me something to sit on until I’m feeling well enough to stand up again.” – Heather W.

16. “It’s hard to describe, but it’s like you’re in a constant battle with your own body. It sometimes feels like you’re trapped underwater and not able to breathe, especially when your symptoms are at their worst! Then there is the feeling like you’ve run a marathon but are stuck in a loop and your muscles are cramping and you experience muscle spasms that don’t appear to ever go away! Then there is the, ‘Oh, you don’t look sick’ quote that people seem to say to you over and over.  I say to that ‘I maybe putting a smile and brave face on things, but inside it’s a completely different matter!’” – Katherine B.

17. “Inconvenient is one [word] I’ve been dealing with. It seems like the illness itself is inconvenient. The symptoms can worsen at inconvenient timing.  I feel like I’m inconvenient to people and people also have treated me like I’m an inconvenience.”  – Lyssa A.

18. “I am a strong woman, I’m tough, I have done things in the past and dealt with hard situations as a nurse and in my personal life. Dysautonomia is a thief of dreams, joy, stamina, identity, time, health, life! It’s like a cruel little creature, sneaking around in the dark waiting to take you somewhere you don’t want to go! It’s one of the clubs no one wants to join!” – Loretta F.

19. “Trapped in my own body. I’m young and want to go go go and get things done, even if this just means doing a load of laundry or vacuuming my house, but dysautonomia doesn’t let me do that. I’m at the mercy of my own body, as I struggle against what my body wants to do (pass out) versus what I want to do (live a normal life).” – Laura T.

20. “I feel like I have smoked for 40 years. After walking across the parking lot my lungs struggle my heart races, my brain struggles trying to get enough blood to keep me from passing out, my vision sees pretty lights. Then I remind myself I’m 29, and that I shouldn’t feel like I’ve chained smoked and then tried to run. Really I’ve never smoked and I’m only walking.” – Alicia D.

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25 Ways to Be a Good Friend to Someone With Dysautonomia


Having a chronic illness is different than having the flu or a broken bone.  Some days are better than others, with no indication as to how long “good days” will last. What can help the most is an understanding friend. Dysautonomia Support Network asked our members for ways they wanted their friends to reach out and support them. We loved hearing these ideas and hope it brings inspiration to others for how to be a good friend to someone with dysautonomia.

1. “To do their own research on it and try their best to try to understand and help spread awareness.” – Amanda S.

2. “[My friends] don’t try to ‘fix’ me with the trends they hear about. They let me know it is OK if I can’t do something but they don’t stop asking. If we happen to go somewhere they watch me like a hawk to make sure I am OK, and when I am tired they are OK to leave no matter what we are doing. Most of all they just love me for me. I don’t have to put up a strong facade… they see me at my worst and at my best.” – Lin A.

3. “Remember that we still have feelings! Don’t stop asking us to do things just remember that sometimes we may not be able to or have to cancel at the last minute.” – Susan B.

4. “One way someone who can be a good friend is by not always wanting to go out but to stay in also ordering take out and just hanging out watching movies or playing video games. A day in is just as important as a day out.” – Doreen M.

5. “My friend arranged a rotation of friends to visit once a week in the morning when I am home alone. Such a wonderful treat. They pick up a key the day before so they can let themselves in if I am sleeping or too weak to move.” – Naomi S.

6. “Simply ask, ‘What can I do to help?'” – Lexi C.

7. “Know that I am not ignoring you. I may have to cancel plans, I may have to focus on me, or I may just be too tired to physically hold a phone to call or text.”  – Shannon B.

8. “The best things my non-sicky friends have done was to ask me questions to help them better understand. Several of them have also researched on their own, and it has made me feel as if they care enough to take the time! It was all overwhelming to me to understand, and I began to understand that for many people who loved me, it was overwhelming for them too. The key is truly basic understanding, and that starts with an open conversation.” – Alexandra Z.

9. “Remember I am still me. It takes dignity and strength to live with what we have in this society, but I’m still in here.” – Lauren R.

10. “If you are going to the grocery store, call me and ask if there is anything I need. I will pay for it. I recently had two friends give me free meals from two online food services. I won’t have to shop for the ingredients. Just check in with me to see how things are going.” – Lisa C.

11. “Be patient with me, I cannot do things the way I used to. Try to understand, if it’s hard for them to adjust to my limitations, imagine how I must feel.” – Cindy W.

12. “Please be understanding and patient when it seems like I am being unreliable or flakey. For example, I may have to cancel unexpectedly because I’m not feeling well, or I may not return a call because my brain fog caused me to forget. I care about you and don’t want this illness to make it seem otherwise.” – Alia G.

13. “If you have the time, help with cooking and cleaning. Something that takes a half hour could be a huge drain on a sick person, so the amount of time you put into it is appreciated disproportionately to the difficulty of the task. Last year a friend came over and cleaned my kitchen floor. It was amazingly helpful.” – Julie M.

14. “The best thing a friend can do is stick around and be understanding. Listen to me when I need to vent even though it may feel awkward for you. I’m usually not asking you to help me ‘fix’ things, I just need you to listen.” – Emi M.

15. “Please don’t tell me what an inspiration I am when I share my struggles with you. I want to feel like your friend and not your ‘good deed’ for the day.” – Ginny F.

16. “It takes a lot for us to accept our life the way it is and accepting our limits, so if we say we can’t, then respect it.” – Nicole J.

17. “Keep in mind this is not a cold that goes away with some medicine. Just using the phrase ‘When you are better we should…’ breaks my heart because that day may come, and it may not. My job is to focus on today, and what I truly need from you is support today.” – Adrianne L.

18. “Remind me that despite how it feels, my illness hasn’t made me invisible. That somehow I am still a little bit of the person I used to be, and that I still have something to offer a friendship.” – Rachel R.

19. “Make plans with the unstated mutual understanding that they may have to be adjusted at the last minute! Also, listen with open ears even if you don’t understand everything. Feel free to ask if you want but if not, have your ears open.” – Ronni H.

20. “To continue to invite me places, and perhaps be mindful of our limitations. Like if we’re planning on an activity that has lots of standing, be aware of seating.” – Ashton A.

21. “Having a small visit from a friend or even have them say hello from time to time and see how things are going. It’s so easy to feel isolated and to know you’re not alone really means a lot.” – Tammy P.

22. “Understand that my trips to the ER aren’t because I’m overreacting or want attention, they’re because I genuinely am scared and need the treatment I receive there. That my vitals aren’t caused by an anxiety disorder or that my symptoms are not all in my head. Dysautonomia is a real debilitating and serious illness.” – Lyssa A.

23. “Offer to come to my appointments with me because you want to learn more! It shows how much you really care about me and what I’m going through.” – Adrianne L.

24. “This is a real disease that is drastically life-changing. There are new rules and limits my body didn’t have before.” – Laura T.

25. “By reminding me to take care of myself, and things I can do to do so.” – Melissa H.

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12 Suggestions for Advocating for Yourself as a Patient


When living with chronic medical conditions, one must advocate for their own health – actually, their own life. In my case I have several conditions which are rare or more difficult to diagnose and challenge doctors’ knowledge of medicine. These diagnosis include dysautonomia, Sjögren’s syndrome, Ehlers-Danlos syndrome and mitochondria dysfunction.

What these conditions have  in common is they often  present as illnesses that cannot be seen outwardly (invisible) but result in varied symptoms for the patient. Symptoms include headaches, joint and overall pain, digestive issues, breathing difficulties, unstable heart rate and blood pressure, allergies, exhaustion and eye problems. The list goes on.

Advocate: to speak, plead or argue in favor of; a supporter or defender. 

Advocacy is vital for survival. We must voice our concerns and encourage medical personnel to look in different directions for treatment. We are not your typical patient visit in which an infection or other ailment is treated and the patient recovers. Rather, each medical problem often produces a domino effect of issues. An illness can spiral and cause dizziness, dehydration and exhaustion. Some medications can interfere with our bodies and conditions. What takes a healthy person days to recover from may take us weeks.

I learned once again recently that I must advocate for myself – an action which is difficult when feeling crummy. Upon experiencing jarring, crushing pain in my stomach/back on two separate occasions, I knew something was wrong. The pain took my breath away and made me weak and wobbly.

During the first incident, I called the doctor and was told by a nurse to take nausea medicine. Thankfully the pain was short-term and I could rest.

Three days later pain erupted (on a Friday afternoon). I was left lying flat on the bed trying to remember how to breathe as the stabbing pain shot throughout my torso. Out of desperation I called the doctor and the same nurse (who is oftentimes a poor listener and rude) took my information. I wanted to be seen but instead was told I would receive a call back.

I could not move and took refuge in the small breaks between pain attacks. About an hour later I called the doctor again and the nurse rattled off all these things to do if I did not improve. I know a scan of some sort was mentioned but later realized that one cannot just walk in to a radiology practice and receive such a test; a doctor referral is necessary.

After pleading with this nurse to get me in with the doctor, as the pain was off the charts, she declined and I hung up. And then I cried out of sheer frustration at this nurse’s behavior.

I was seeking help from the very place I knew to go and was turned away. After living through a few more attacks I knew the emergency room was imminent.

A five-hour emergency room visit produced no answers. After fluids, nausea medications, a CT scan and blood and urine tests, I was told there was slight inflammation and to follow-up with the doctor.

After two days of resting I read the report from the ER. To my surprise, several tests showed abnormal results. No mention of this was given at the hospital. I researched these tests and knew the results could not be ignored. I would need to contact the doctor and risk the chance of having to speak to the nurse who had turned me away.

Instead I composed an email through the patient portal. It explained the two episodes, my being unable to see the doctor, the emergency room visit and the blood and urine results that were not disclosed to me. (Note: If I had felt better I would have inquired at the hospital about my labs. Regardless, someone should have read me those results.)

Since then my blood work normalized – after four blood draws. I have seen my doctor, who theorized that a virus hit me harder than it would a healthier person, causing intestinal spasms. If spasms occur again I will be treated with medications.

It took about three weeks to return to my baseline health. Living with chronic conditions, I know I will be challenged again to advocate for my health. Here are suggestions on how to advocate for yourself:

1. If possible, bring someone with you to the emergency room or doctor visit. Instruct that person on what questions to ask, including: “What are the results of the tests performed?” and “Which symptoms could arise that could warrant a return trip?”

2. Update and carry a detailed list of medications in your wallet at all times.

3. Carry a sheet with diagnoses, dates and which specialists treat each condition.

4. Ask for access to your patient portal so you can review notes/results from the visit.

5. Make a follow-up appointment with your primary care doctor to evaluate your condition, review information and see if additional treatment is necessary.

6. Realize that advocating can be difficult, but is necessary to receive the best possible treatment.

7. Don’t give up, even if discouraged.

8. Forgive yourself if you make mistakes, cry or forget to ask a question. We all make mistakes.

9. Learn what you can about your condition to be as educated as possible.

10. Review the emergency room paperwork for valuable information.

11. If treated poorly, state that on the hospital survey and/or call the patient relation’s person at the facility.

12. Ask others with similar medical problems for recommendations on good medical treatment and personnel.

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Thinkstock photo via monkeybusinessimages.

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