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25 Ways to Be a Good Friend to Someone With Dysautonomia

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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

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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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22 Things People Don't Realize You're Doing Because You Have Dysautonomia

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Living with dysautonomia can be difficult and often those with it must adapt in unusual ways. We asked our members what things they do to survive their day-to-day that people don’t realize is because they have dysautonomia. We were surprised at how many simple ways our members help their symptoms that easily go unlooked by their friends and family. By hearing these stories, we can all get one step closer at understanding and empathizing with all it takes to live with a chronic illness.

1. “I use the table to help me stand, and I leave my hand there for a couple seconds to make sure I’m good before I start walking. I’m also not being rude when I pull one or both knees up and rest my foot on the chair while I’m sitting.” — Alexandra Z.

2. “If someone is sitting next to me I turn my whole body to face them while we are talking. If I have my head turned to the side for too long I start to feel dizzy.” — Alexandra R.

3. “If I’m checking my watch often, it’s not because I’m bored or impatient. I’m checking my heart rate on my fitness tracker because I feel ‘off’ and I need to know if my heart rate is too fast or crashing.”— Jennifer N.

4. “When I pull out my own salt shaker with Himalayan salt while we eat together, it’s not because I’m a salt snob, a salt addict, or I think the food is too bland. It’s because I need so much salt to keep my BP up that I salt everything — even salads, desserts, and water.”— Jennifer N.

5. “I keep my house at a comfortable 67 degrees year round because of severe temperature instability. When a friend comes over or we have guests, I offer complimentary blankets, sweatshirts, and fuzzy socks so they don’t become hypothermic. This is of course while I’m in a tank top and shorts.”— Kimi L.

6. “I wear a Fitbit to track my heart rate, and only for that reason. People see it and think I’m a fitness person, which couldn’t be farther than the truth.”— Erin V.

7. “I sway back and forth or go from flat-footed to tippy toes to get the blood moving while I’m standing still.”— Alexandra R.

8. “Touch my neck to check my pulse and make sure it isn’t freaking out.”— Shy A.

9. “I cut my hair super short to help with temperature regulation.”— Katie D.

10. “I work ahead in school and work, and opt to do group assignments by myself. I don’t know if I’ll have to miss this obligations if I suddenly become ill.”— Shannon R.

11. “I walk around and move about a lot, fidgeting, pumping my leg muscles, when standing. I am unable to stand still for long because the blood goes to my lower extremities and I feel faint. What might look like impatience, restlessness, or anxiety is actually my way of keeping my body conscious while standing. It often takes concentrated effort and deep breaths before I am able to move from a seated to standing position.”— Endurance G.

12. “If I am on Facebook on my phone when I am out or with you, I may be worried about a friend in a procedure, or surgery or in one of my groups, and I am checking on them! No, I’m not *that* addicted to Candy Crush or Dice With Buddies… I am just worried about my friends and waiting to hear for the ‘all clear’ from a major appointment or issue!”— Alexandra Z.

13. “I yawn a lot because of air hunger, not because I’m always tired.”— Faith P.

14. “Planning isn’t a neurotic tactic, it’s what I have to do to be able to do anything. I have to conserve energy in every way possible, including laying out my clothes the night before, laying out meds, and showering the day before. I know my body best. It may not make sense to you that I’m freezing, burning up, exhausted, or missing words, but trust me I’m fighting a war with my body.”— Wendy W.

15. “I’ve become internalized and antisocial.”— Angie B.

16. “I cross my legs in a weird way if I have to stand still for more than two minutes.”— Pauline B.

17. “I wear lots of layers regardless of temps because I freeze one moment (even when it is 80 degrees out) and the next I am sweating from every pore on my body (even when it is freezing out). Constant temperature roller coaster. If I get too hot or too cold it compounds my symptoms.”— Lin A.

18. “I avoid singing and blowing bubbles (I work with kids), wake up three hours early to start my routine so I can safely get out bed, shower at night, avoid standing and talking, use a grocery delivery service, shop for clothes online, the list goes on and on. No one realizes that every single thing I do, I do differently now than before I was sick.”— Lindsey W.

19. “After I stand up, I pause, to make sure I don’t black out.”— Adam S.

20. “I always have something to drink on me, even if I’m out. Water doesn’t cut it, so I try to have a sports drink on me. I have to be drinking constantly so my blood pressure doesn’t drop to the point of me passing out in public.”— Jo C.

21. “I wear a hat on buses with movies playing overhead so the changing light won’t give me a seizure.”— Shannon B.

22. “I take off my coat often and/or under-dress for the season (even in winter), because I can’t sweat properly and also get really nauseous and dizzy if I get overheated even a tiny bit.”— Adrienne S.

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The Ultimate Dysautonomia Playlist

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We believe in the therapeutic affect of music at the Dysautonomia Support Network, so we asked our Facebook page followers, “If you live with dysautonomia, share one song that has helped you through a tough time.” Here are 25 of the most popular songs our followers came up with. The next time you are having a bad day, download this playlist and get inspired!

1. “Fight Song” by Rachel Platten  — Jody Alexander Harris

2. “Stronger” by Kelly Clarkson — Lin Aden

3. “The Climb” by Miley Cyrus — Amanda Aikulola

4. “Shake It Out” by Florence + the Machine — Shannon Jean Reynolds

5. “Alive” by Sia — Nicole Johnson

6. “Rise Up” by Andra Day — Kassady C. Oberacker

7. “I’m Still Standing” by Joel Osteen — Nicole Johnson

8. “Just Be Held” by Casting Crowns — Adrienne Shirk

9. “Titanium” by David Guetta/Sia — Dacey McCloskey

10. “The Fighter” by Gym Class Heroes ft. Ryan Tedder — Amanda Aikulola

11. “Migraine” by Twenty One Pilots — Dana Bradberry

12. “Brave” by Sara Barailles — Lin Aden

13. “All the Above” by Maino and T-Pain — Betsy Stark Barton

14. “Tough” by Kelli Pickler — Angela Cohen

15. “Real” by Of Mice and Men — Emily Lafferty

16. “Shake It Off” by Taylor Swift — Clary Angelia

17. “When You Believe” by Mariah Carey and Whitney Houston — Amanda Aikulola

18. “Get Better” by Frank Turner — Wendy E AndresEn

19. “Great Big Storm” by Nate Ruess — Jessica Santacrose

20. “Breathe” by Ryan Star — Jessica Perlini Fasso

21. “Get Back Up Again” from “Trolls” — Rachel Reitano

22. “F**kin’ Perfect” by P!nk — Brandi Burnette Collins

23. “Don’t Stop Believing” by Journey — Ali Zimmerman

24. “Trust in You” by Lauren Daigle — Beth Skinner

25. “Win” by Brian McNight — Amanda Aikulola

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My Hopes for the Future of Dysautonomia

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“There’s nothing wrong you.”

“This is all in your head.”

“Talk to a therapist about this.”

It doesn’t matter that you know your body is failing you. It doesn’t matter that you know each and every way your anxiety manifests itself within you, and what is happening to you now isn’t anxiety at all. It doesn’t matter that tears are pouring down your face as you plead for a doctor to see your pain and help you figure out what is happening to you. It doesn’t matter.

Because of the lack of education within the medical community and general population on disorders of the autonomic nervous system, it doesn’t matter. Doctors send you away with a referral to a psychiatrist or a prescription for anti-anxiety medication. It doesn’t matter that you have been down this road before and it doesn’t matter that you know, without a doubt, these won’t help.

As I sat in too many different doctors’ offices to count, I hoped. I prayed for some answers. I held my breath as the nurse called my name and I headed back into a room. Questions I’ve answered hundreds of times were asked again as the nurse made notes of this symptom and that symptom. She says, “The doctor will be with you shortly,” and I take a deep breath and pray.

“Please let this doctor see.

Please let this doctor hear.

Please let this doctor know.”

The doctor walks in, shakes my hand and asks what brought me in today. I try to explain. My heart races when I am sitting but races even more when I stand and constantly beats in weird patterns that I know aren’t right. I can’t eat due to bloating and severe stomach pain. If I stand more than a few minutes I pass out and I’m constantly dizzy. I go from too hot to too cold within a matter of seconds and there’s a constant ache in my joints. I am so fatigued that it feels like I haven’t slept in years and I can’t remember things anymore. I can’t run anymore, I can barely walk.

By the time I’m done explaining I know that I’ve already lost the doctor. He goes through my records as we sit there in awkward silence and I try to stay positive. I tell myself he sees something, I tell myself he’s made a connection. After a few minutes of silence pass he folds his hands and asks the question I dread the most…

“Are you seeing a psychiatrist? You’ve had several tests that don’t show too much to explain your symptoms. Have you been anxious?”

My hope is shattered and I can’t hide my disappointment.

I leave completely defeated. I leave still very sick with no answers. I leave feeling hopeless.

My story is not uncommon; in fact, it’s far too common within the dysautonomia and the invisible illness community.

On average, it takes six years for a person to be diagnosed with dysautonomia, when it should only take 15 minutes for a doctor to recognize the symptoms. This means more and more years of struggling for those with this debilitating illness, and while there is currently no cure, there are still treatment options to improve the quality of life of patients. Dysautonomia is not rare – it’s just rarely diagnosed, and this all goes back to the lack of knowledge in the medical community and general public.

the dysautonomia project

I’m writing this to pledge my commitment to continuing to fight for awareness, to continuing to fight for all those who struggle with feelings of hopelessness or struggle to get the medical community or even their families to believe them.

black and white photo of woman holding a note card that says 'hope'

I’m writing to tell you that if you’re struggling, you’re not alone. One day… six years will be turned into 15 minutes.

We are all in this together.

For more information on dysautonomia and how you can get involved with joining our fight, please visit The Dysautonomia Project.

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How My Husband Exceeds His Vow 'in Sickness and in Health'

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When you get married, one thing that some people don’t realize is that the “sickness” in “in sickness and in health” may come earlier than expected. With any illness – chronic, invisible, or not – it can strike at any age. It’s something that I feel like many young, healthy people rarely think about. Especially before saying, “I do.”

I’m apart of a lot of dysautonomia and Ehlers-Danlos support groups online and way too often I see someone who is upset, sick and just at a loss because their spouse or partner doesn’t believe they’re sick – or they’re just tired of dealing with it.

Whether you were sick before you met your partner or if it surfaced after you’d been together for months or years, it can definitely throw a curveball into the relationship. Day to day life becomes unpredictable as well as any long term plans and goals. While only one person may be dealing with the illness itself, you have to acknowledge that all the inconveniences that come with it also greatly effect our loved ones.

I had health problems before my husband (Greg) and I met, but my symptoms took a turn for the worst after we had been together for almost two years. I was diagnosed with dysautonomia in October of 2009 – just one month before Greg proposed.

The year and a half that followed our engagement was less than ideal. I was pretty much stuck in bed 90 percent of the time. Unable to sit up long enough to even eat a meal together without feeling like I was going to pass out. I think the only places we went together during that time were to a few doctor appointments and trips to the emergency room.

Despite all of this, Greg kept coming back to spend weekend after weekend with me at my parents. While I’m sure there were times he was frustrated and probably wanted more for us – he never said a word to me about it. Never complained and never questioned me.

Now don’t get me wrong – of course there were rough times. Once we got married and were living together, there were more changed plans, canceled plans and backing out of things last minute due to me not feeling well which obviously ended in disappointment. Being together all the time gave him a clearer understanding of just how much my health issues effect even little everyday things. How I will sometimes leave any given room in our house in a disaster state because I got too dizzy to finish cooking, cleaning, or whatever I had been doing and had to go lay down. He also learned that “I’m tired” sometimes means that I will cook and eat dinner with him, but then go directly to bed where I will stay sound asleep for the next 12 hours because I’m so exhausted from just being. At times, this can happen for a few days in a row and we feel like we barely see each other even though we live in the same house.

But after being together almost 10 years, he still reassures me that whatever happens isn’t my fault. That I can’t control my health. For those of you who have any kind of illness, you know just how much hearing that means.

So to my hubby, I want to say thank you. For laying around with me for hours when I’m not feeling well. For opening my Powerades when I’m too weak. For making me laugh by comparing me to a wild cat when I almost fall out of your arms after you carried me to the bathroom on a horrible day with vertigo. For accusing me of stealing our kitchen spoons because you know I am low on them (a little spoon theory humor). For going along with my more adventurous plans on my “good days” even when you know it will probably end in a crash. I feel very lucky to have found someone who just “gets it.” Through the highs and lows, I am forever thankful for all that you do to make the best out of everything that comes our way.

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