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Stanford Medicine

Autoimmune Disease, Chronic Disease, Patient Care, Pediatrics

A wake-up call from a young e-patient: “I need to be heard”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. Our latest comes from 15-year-old Morgan Gleason, who lives with the autoimmune disease juvenile dermatomyositis. 

Before June 18, 2010, the day I was diagnosed, I knew the medical system the way that most kids do. I went to the doctor for immunizations, physicals, sore throats and bones that might be broken. Then, I developed a rash on my joints. I started sleeping more than normal, was very weak in my muscles, and experienced frequent stomachaches and headaches.

At the age of 11, after a year of these symptoms, I was diagnosed with a rare autoimmune disease called juvenile dermatomyositis. I suddenly was in a whole new medical system. I had to learn to swallow pills, wait for hours in doctors offices, spend nights in the hospital, worry about what was happening, deal with some not-so-nice doctors and nurses, and endure a lot of pain. I also watched my parents get frustrated with figuring out medical bills and trying to understand all of the claim statements and appeal denials.

Now I take 21 pills a day, get two infusions a month by an IV, and give myself an injection once a week. I have more specialists than my grandparents, and I spend a lot of time as a patient.

This January, I was hospitalized for the second time in four months for meningitis due to a reaction from a treatment I received. After four days of little sleep and an excruciating headache, I made a video about my hospital experience and posted it online. To my surprise, the video got a lot of attention. Forbes, Time, the Huffington Post and other outlets wrote about it. I believe that the video was popular because my experience was a common one and struck a nerve with others.

I am appreciative of the care I have been given. I love the hospital where I get my treatment, and I think it’s a great hospital. The medical students, residents, attending physicians, and specialists are great doctors. The nurses are also really great. This is not an issue with the individual people or hospitals. The issue is much bigger, and it’s the way the system as a whole is designed.

My video had a few main points. I was frustrated that I couldn’t get any rest in the hospital. The system is designed around the schedules of the doctors and the desire to discharge patients by noon instead of around the circumstances and needs of the patient. Second, the doctors come in individually instead of coming together and addressing all the concerns at one time. Third, when patients are awoken from deep sleep, they’re not going to be as engaged as they would be when they are alert and comfortable. Finally, patients, and even children and teenagers, appreciate having the doctor talk with them instead of having the doctors talk over them or away from them in the hallway.

I’ve been amazed by the hundreds of people who have e-mailed, commented on posts, direct-messaged me, and blogged about my video. I’ve been amazed at how many people have shared similar stories about how they didn’t get any sleep in the hospital or how they didn’t feel their doctor listened to them or really tried to understand. Many patients are fed up with the system being so difficult to use. I don’t think many people in the health-care system fully realize that most people needing medical care are already weak, not feeling well, frustrated, and scared.

The line in my video that people really seem to like is “I am the patient and I need to be heard.” The system really should be built around the patient’s needs, goals, convenience, and affordability.

I believe engaged patients get better care. I have learned to be prepared when the doctors come in, to write down symptoms, and to be ready with questions or concerns. As I move from being a teenager to an adult over the next few years, I plan to be a very engaged patient. I know that I’m my best advocate because I know my body the best. I have also learned that other patients often have great experiences to learn from, especially when it is a rare disease.

I’ve been inspired by the response to continue speaking out. I’ve been asked to be part of patient panels, to write articles, to be on podcasts and radio shows, and to speak at conferences. I hope that I can make a difference by giving a voice to patients everywhere.

Morgan Gleason, a 15-year-old sophomore in high school, lives in Florida. She loves horses and rides as often as possible. She plans to pursue a career in healthcare, and she recently participated in a Stanford Medicine X panel on rare disease. See more at http://morgangleason.com, and follow her on Twitter at @Morgan_Gleason.

11 Responses to “ A wake-up call from a young e-patient: “I need to be heard” ”

  1. Michele Henson Says:

    Morgan,
    You are such a smart intelligent young women. And you are much stronger than most of us suffering with Chronic Illness and experiencing the issues you are. Some of us experience very negative experiences that have us afraid of what to do next. (Myself included)

    I suffer from a multitude of auto-immune, central nervous system, lupus, osteoporosis, osteoarthritis, and much more issues. I suffer Chronic Pain 24/7 and myself am on 18 medications just to keep me at a pain level 5-6. Unfortunately many patients like myself have no answer. We are only being treated symptom by symptom, and handed off from specialist to specialist. We are frightened! I have been in this cage for 13 years! I think after so many years of no answers both the patient and the doctors are frustrated with us. This in turn puts a fear in us that is unimaginable.

    We begin to believe we are not being heard anymore. Doctors dread our appointments. I am ready, I am prepared with lists, questions and articles that I have found that I hope may shed light on what is wrong. All to no avail.

    I could go on and on but I fight inside the urge to talk constantly about all of my painful ailments and fear. But I have my own saying…”I am not my illness” As many know when we become chronically ill we end to lose our friends. Become lonely. Depressed. I am trying to convince myself that I am still the loving, giving person I was before..only ill. I don’t want to be identified as an illness.

    Well this is getting a bit long but I wanted to thank you from deep in my heart for bringing us out of the shadows. I am so proud of you. Your family and friends are so lucky to know you!

    And most of all Morgan, I HEAR YOU!!!!

    Love and hugs to you!

    Michele

  2. shilpa Says:

    You are truly an inspiration. Keep on the good work.

  3. Drina Brunsting Says:

    Three years ago my beloved husband of nearly 30 years was rushed to the ER with an apparent stroke. Three days later he coded, was intubated and placed on life support. He remained in a coma for nearly 2 weeks. Subsequent MRI and lumbar puncture confirmed HSV E.He never had a stroke. His hospital stays lasted over 4 months with a total cost of over 1 million dollars.

    He was very belligerent in the rehab and would yell at the therapists. The doctors put him on Ativan, which really made him obnoxious and hard to deal with. The therapists hated working with him. I kept requesting the Ativan be lowered because he would be too lethargic to do his therapies. I would walk into his room and see he was not in his therapy class; and he would have his head in the food tray; literally passed out. The doctor did not want to reduce the Ativan, but did after I insisted. Thank God for that because it is highly addictive and causes huge problems in getting off of it. It has to be carefully tapered. Upon discharge, he was on the lowest dose possible.

    When he came home he was a mental and physical wreck. He was anxious and abusive and was in a wheelchair. He was in no way the husband I had married, who was sweet and even tempered and never raised his voice to me or our daughter. He was one of the most caring and compassionate people I had ever known. This difference in personality broke our hearts. He did not care about walking and would push me away if I tried to help him up. He bit me and our daughter. I was bruised form head to toe. I slipped a disk trying to get him up one day and had to be taken to the ER.

    He would become incredibly anxious at night and would yell and scream out loud all during the night. He was also incontinent and had terrible anxiety about being moved; even in the bed. So, when I had to change him he would grab my arms and push me away and yell at me. He would imagine people looking in the windows at night. He thought I was trying to harm him and he hated to be touched. He would yell even if the shower was on because he could not stand the feel of the water on his skin. He was also hyper-sensitive to noise. He would hear everything and could not stand to have the TV or radio on. If the lawn people were here, he would yell about the noise outside and want them to leave.

    I would try to change him and clean his wound on his backside that he had acquired in ICU. I had to keep it very clean, but it was a struggle every day. After several months the wound finally healed. He also had an acquired ICU superbug infection in his bladder. I changed urologists 3 times before I found one who wrote a compounded antibiotic solution that I could irrigate his bladder with daily for over a month. The infection finally cleared up, and his mental state improved some when that infection was cleared.

    We literally did not sleep for a year or more. I was beyond exhaustion and had lost close to 30 pounds. I would pray every day to just have the strength to make it through one more day. He would chew on everything, but hated to eat. He chewed through pajama tops, tee shirts, towels and sheets and blankets. He had difficulty swallowing and said he could not taste the food and many times would just spit it out onto the floor. He ended up with another G tube placement because he lost so much weight.

    I had to take him back to the hospital 10 months later due to bizarre behavior after another doctor put him on a neuroleptic to try to ‘tamp down his anxiety’. He opened the car door on the freeway because he could not stop moving. He forgot how to walk. I admitted him to a different hospital with a stellar reputation and it turned out to be a blessing.

    The team of neurologists told me that due to the lesions in his brain that he just could not tolerate strong medications. This is something I had felt intuitively all along, but could not get one doctor to listen until these doctors sat me down that glorious day and explained everything so well. They kept him in ICU for 9 days and washed the drugs out of his system. The therapists got him up and walking with a cane again.

    That weekend he came home. It was like he started to wake up, and was calmer and we were just talking on the patio like old times.
    The next month I found through extensive online research a University of Maryland website– that stated acupuncture helped with memory, sleeping, and anxiety sequelae of E. I got a referral to an Eastern practitioner. He started remembering more and more and started sleeping finally. His anxiety decreased. He still goes and looks forward to every treatment. He is reading, driving (a 5 speed stick shift), and designing again (he is an architect).His office is still closed, but he is always drawing and designing for the practice.

    He takes B complex, C, Omega 3, Calcium, Magnesium and D. I cook organic foods daily and he has regained his taste and love of food. He is back to his original weight before E, and so am I. We take a walk of over a mile every single day.

    He drinks herbal green tea, ginger tea and chamomile tea & lots of spring water. He also takes an herb that was mentioned in the same research study called Cat’s Claw (Uno de Gato). It is an antiviral herb that has been around for thousands of years.

    I look back on this extraordinary experience and I truly cannot say exactly how we survived this whole ordeal. He is not bitter or angry at the closure of his business or the drastic change in our lives. He says all of the time that I saved him & his acupuncturists saved him, and he is grateful to be alive. Personally I don’t really know what saved him, but I just could not give up on him. I was told I would have to put him in assisted living, etc. I was not going to do that without a fight. I am and never have been a passive person, and I desperately wanted my mate and best friend back.

    It has been over 3 years now and he improves constantly. There is no time line for recovery from this. It continues to evolve. I just want all of you who have been through a similar experience with your loved ones, to please hang in there, be an advocate, leave no stone unturned and do not give up. It will get better. There is hope.

  4. Gilda Says:

    Wow! Your maturity and insight is amazing. All the best to you and I will be passing this on! Gilda

  5. Dab Napthine Says:

    Reading Morgan’s life journey so far makes me realize how fortunate I was to have had 46 years of good health. I am 54 now and the last 8 have been in some ways parallel to Morgan’s story.

    “I am the patient and I need to be heard.”

    The same frustrations of not being heard, the hospital stays that had me begging to be discharged so I could get some sleep and access to a proper hygiene schedule are right in step with Morgan experiences.

    I have also tried the presenting with a list of my symptoms so I could be more efficient and was told to pick one thing as my appointment time was slotted for 5 minutes.

    The number of times I cried coming home from an appointment out of sheer frustration was nothing compared to the anger I felt when I accessed my medical file and saw the footnotes. I was labelled as rude, arrogant, disrespectful and dismissive. I was asking for help. I remember being scared, in constant pain, frustrated and voiceless. I also understood why I had been labelled. I was outspoken and an advocate for better care not just for myself but for others. I had been personally subjected to a serious medication error and paid the price, then told to go away.

    So here is where my opinion differs from Morgan when she writes:

    “I am appreciative of the care I have been given. I love the hospital where I get my treatment, and I think it’s a great hospital. The medical students, residents, attending physicians, and specialists are great doctors. The nurses are also really great. This is not an issue with the individual people or hospitals. The issue is much bigger, and it’s the way the system as a whole is designed”.

    It is the medical students, residents, specialists, physicians and nurses that need to be the change. We did try patient engagement workshops where I live and it appeared to be used against us. We did not understand the challenges and stress health care workers face every day. I was confused, did they think we had gone to this workshop for a group hug? We understand more then you think.

    So after 8 years of bleeding kidneys, swollen brain, a buffalo hump between my shoulders, 100 lbs in rapid weight gain, chronic pain, allergies so severe they are life threatening when none had ever existed before and a list that no-one will ever see I have given up. Since I do not have a diagnosis no news is good news I am told.

    What the Inspire site has given me is the voice our health care system (Canada) silenced years ago. I have met online, other people facing the same challenges, frustrations and the unknown. We help each other in so many ways, the most important way however in my own opinion is thru acknowledgment. We understand the really weird symptoms like one morning you stand up to get out of bed but the pain in your heels will force you to balance on the front of your feet for 3 months then one morning you wake up and expecting pain when you stand up but the pain is gone. Meanwhile your GP prescribed compression hosiery. We understand when someone describes a surge in blood pressure and internally it feels like there is a 7.0 earthquake happening, your body is suddenly soaked in sweat and your face is purple. Then everything calms down, you cry and then have an epic bowel movement. Even if we have not had the same symptoms we reach out in moral support.

    Why is this important? Because when you have just spent the last year or two or eight being told your crazy, those are not real symptoms, your making them up to get attention and you are labelled…having someone acknowledge your pain and frustration because they have had similar experiences suddenly makes the world smaller and kinder. Because the resources and diagnosis shared good or not so good makes us stronger when we are many to carry the news. This is important “Medical Staff at Stanford.

    My journey began with brain surgery in the 3rd ventricle to remove a cyst. Immediately after the surgery and for the next 7 months I still remember it as my period when no birds sang. No matter how hard I tried I could not find my way back to my life. Then one day I found tucked inside the pocket of the duffel I had used for the hospital stay a phone number and I remembered it was another brain surgery patient down the hall from my room that I had become friends with during our stay in the brain trauma center. I phoned him and we agreed to meet for lunch. In any other dimension I doubt we would have become friends but we shared an experience, a profound experience that changed not only us but how the world now treated us. Terry lived in a world where no birds sang as well and together we tried to find our way back. We became good friends and I was his cheerleader when his cancer retreated with the chemo. I cried when he died and remembered him when I heard the birds sing for the first time a month after his passing. I still miss him.

    When no birds sang is a place you wake up in after brain surgery. For all intents and purposes you look and act normal and function quite well. You get up, wash, eat breakfast, go to work, come home, wash, go to bed. The difference is, its nothing more then a repeated daily function. The little things that made you smile, appreciate life and be thankful no longer exist. Everything is grey and black and white. If it had not been for Terry’s friendship and understanding I may have given up trying to find my way back to who I was and simply accepted where I landed.

    Never underestimate the healing power of kindness, empathy and holding someone’s hand.

    Now for Morgan I have 3 wishes in this order:

    1) Absolute total perfect health

    2) It is okay to: “Be brave enough to start a conversation that matters.”
    ~ Margaret Wheatley

    3) Always have horses in your life. Not only are they good for the soul they smell great as well, oh and keep your heels down :)

  6. Janet Says:

    Hi Morgan ~ I was inspired to write as your story came my way when I needed support myself. Having a rare disease myself, but diagnosed at a much later age, through trials and tribulations, I also recognized that I have to be my own best health advocate! I admire your resolve. I honor your light.

  7. Wave Wolf Says:

    Reading here the empathy that you have awakened, Morgan, is most heartening! I have a young friend recently diagnosed with dermatomyositis, so this hits close to home. Thanks to all who have shared their journeys in this thread.

  8. Nicole Green Says:

    Hello, Congratulations in surviving a very challenging time in your life. The lessons you’ve learnt will power you through life’s journey.

    Anyone reading this, please try to find out if your mother took any medication or was exposed to any toxins when she was pregnant with you.

    There is extremely strong evidence that Fetal Toxicity is responsible for a number of Auto Immune Disease and the rise in Autism.

    Modern living alone has created a downhill spiral in the quality of health. All my health issues are a consequence of my mother taking the anti nausea drug, Thalidomide when she was pregnant with me. Thalidomide caused a great deal of harm to unborn babies, in the early 1960′s all over the world.

    I believe that Doctors should be asking that question first to help them with their diagnosis as soon as possible.

    Nic

  9. Vikki Says:

    Bravo ! It’s comforting just to be listened to in a non condescending rushed way isn’t it???

  10. Leeanne Says:

    Morgan, what a mature and well written account. I hope that your hospital stays in the future are short. It is very perceptive the lessons you are learning about the system and as you advocate for your own health I am sure it will have a positive impact on other patients.

  11. Rus Talis Says:

    Morgan, yours & others experience here show what most are incapable to express, thanks (for care &attention) but no thanks,
    (for chemistry guesswork) .. your group is the first i have in shock read, after my post today titled malabsorption of B12, talis77, i am sure u shall quickly expert yourself with fact over fictions.. to which you have fallen victim.

    I note buffalo lump and inflammatory condition beyond imagination, which seem to be products of treatment, rather than disorder.. the one advice i give u is stay away from meat and consume juices of beetroot, celery, carrot, ginger morning and night, with a fresh millet and buckwheat sprouted lunch, no added sweets. and reduce medication as you feel able.

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