When a Doctor Suggested I Just 'See the Psychiatrist Down the Hall'

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I recently went to interview a new specialist to add to my already long list of specialists.

The way the current medical model is set up, doctors look at the sum of your parts instead of the whole when you have a chronic illness like an autoimmune disease. Since there is no specialty for autoimmune disease, I go to the person that specializes in part of the body that houses that particular disease.

I have myasthenia gravis, a neuromuscular disease. This means that I would see a neurologist. Because of complications from myasthenia, I also see an endocrinologist, internist, oncologist, rheumatologist, and an infectious disease doctor. I also need my normal gynecologist, dentist and dermatologist to round out my team.

Unfortunately, when you are seeing this many specialists, you may be limited in the options for candidates. Some cities are lucky to have one doctor that practices the specialty you need. You hope for the best, but have to accept what comes.

I had high hopes for this particular specialist. He was supposed to be an expert in my disease and had written many papers on it. I was hoping he could bring me some relief as I had been feeling very weak lately.

After filling out detailed paperwork, I waited almost two hours for the appointment that took me six months to get. Since long waits are common with specialists, I brought a book and some snacks.

Once in the patient’s room, I was told to undress and put on a paper gown. The room was freezing. When I asked if there was any way to turn the air conditioning down, the nurse said the doctor likes it cold and they aren’t allowed to touch the thermostat. As the cold sunk deep in my bones, I started to shiver.

It was another 45 minutes before a man in a while lab coat walked in looking at my chart. He briefly looked up, then started talking.

You typically answer a lot of questions when you have a chronic disease. I couldn’t believe the one this doctor asked.

Doctor: I see here it says you have myasthenia gravis, but you passed the breathing test and the physical exertion test.

Me: Yes. I’m stronger in the morning and I just took my medication.

Doctor: But you don’t appear to be having a problem, so why are you here?

Me: Because by the end of the day I look and feel much different. It’s hard for me to breathe later and by dinner time I can’t swallow so I am not able to eat.

Doctor: Then just eat earlier.

Me: Excuse me? So your saying to have dinner by 3:00 in the afternoon and I’ll be good?

Doctor: (laughing) Sure. You can get in on the “Early Bird Specials” with the senior citizens.

Me: And what about the breathing?

Doctor: Look. You don’t want this disease. It’s a terrible disease. If you really had it, you would be weak and have trouble walking. You would also be having trouble talking and it would only get worse until you where in a wheelchair or needing assistance with a ventilator in the hospital. I see you have kids. Maybe you’re just tired and a little stressed out. Why don’t I send you to see the psychiatrist down the hall and you two can chat about some medication to make you more relaxed.

Me: Are you saying you think I am making my symptoms up? You do see in my file that I’ve tested positive for myasthenia gravis right?

Doctor: Yes, but they can be wrong. I get a lot of women in here looking for attention. Most of them think they have something because they Googled it.

Me: I had an IV tensilon test from an ocular-neurologist. He confirmed my diagnosis. I’m not just tired, I’m sick.

Doctor: Look, honey, you don’t want this disease. It’s a terrible one. Go home and get some rest and I’m sure you will feel better. I’ll have the front office manager get you the name of the shrink if you want to talk to someone.

All I could do is watch with my mouth open as he pivoted around to leave.

Why couldn’t he see how physically sick I was?

Why didn’t he believe me?

How could a doctor that took an oath to ‘do no harm’ be so harmful?

The current medical system is a complicated forum to navigate. Doctors are overworked and underpaid by insurance companies that only want to approve the most basic of tests and appointments. Still, there is no excuse for dismissive behavior.

I asked a physician I met at a conference recently how he handled the emotional blow his patients felt after hearing the life-changing news of a chronic or rare diagnosis. He looked confused.

What do you mean?” He asked. “If they have emotional issues, I send them to a therapist to get on some medication.”

I wondered when doctors forgot how to be compassionate to their patients. 

It is time to shift our thinking from treating the disease to treating the patient. 

To the doctor who forgot how to be compassionate, I would suggest you remember that one day it could be your mother, daughter or even yourself sitting in a paper gown, scared and alone. 

I would also recommend you keep in mind that each of your patients is someone’s mother, child, or sister.

Doctors step into your life in your darkest hour. Remembering to smile and extend a little compassion could set you up to handle this next phase of your life. It will also give you hope that someone is on your side so you this figure this out together.

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I Hid My Illness for Years — Until One Day I Couldn't

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No one could fake “normal” better than me. I was 26 years old and preparing to get married the first time I found out that I had cancer. Determined not to get derailed by disease, I thought, “OK, this rare form of cancer isn’t going to slow me down. I will just have a little open chest surgery to get the baseball-sized tumor out from under my heart and no one will be the wiser.”

As I was laying on the operating table, I stopped the surgeon before he was going to put me under and said, “Make sure you don’t cut up very high. I am wearing a boat neck wedding dress and I don’t want anyone seeing the scar.”

Looking back, I see that my priorities may have been a little confused. I was more worried about what people would think when they saw the zipper on my chest than that fact that I was about to have a life-threatening (and life-saving) procedure.

I continued to work at my full-time job during chemo and radiation  after surgery. I may have spent evenings projectile vomiting all over the house, but no one in my day life was going to see the pain I had to endure. To the world, I was a champ that could handle anything. Even if I was bald at the time.

After a year of hell (and smiles), I was done with all my cancer treatments and ready to move on with life. Within a couple of years I’d almost forgotten the nightmare altogether. I didn’t identify as a cancer survivor because I’d never accepted that I’d had it. I never wanted to be the “cancer girl.” I just wanted to be living life like everyone else.

A few years later I was diagnosed with thyroid cancer. That was an easy one. The surgeon simply needed to pull that baby out and throw it on the pile with all my other dysfunctional parts, and I’d be good as new. Who had to know? I could still keep up with the “normals,” right?

Then it finally happened. My secret life of illness crept over me like a heavy blanket and all I could feel was darkness. 

One day, I woke up with double vision. Then came the weakness and unyielding fatigue. Then the stumbling. More weakness came until I couldn’t hold my head up anymore and slurred my speech.

It was terrifying. A week later I was at the doctor watching his mouth move but unable to comprehend his statement.

Myasthenia gravis… myasthenia gravis?

What the heck was that? And why was it stealing my life?

I couldn’t hide my secret life anymore.

I also couldn’t joke away my medical issues and tell everyone how fine I was anymore. I had to figure out a way for these two lives, my “sick” and my “well,” to live in harmony. And worst of all, I had to accept myself and deal with the shame I felt for having health issues. 

Broken, I needed to decide if I wanted to be the hidden sick girl or the bold, strong one.

At first, I wasn’t sure I had the fight in me. Did I really want to live a life different than everyone else?

Then I saw it. The picture of my happy children, smiling back at me with the joy in their eyes I’d long forgotten.

The choice was simple. I needed to be strong for them. 

I worked for months to rebuild my body. Then as I got stronger, I realized I was not just doing it for them, I was doing it for me.

As the blanket of hopelessness began to peel back, a glimmer of light shined though. Then it got brighter. Then I got brighter. Accepting who I was, diseases and all, helped me become a more integrated version of myself.

I no longer had to fake being “normal.” I simply had to redefine it.

“Normal” is a relative term. Our lives are never linear, they are a hologram, comprised of many different angles to view our varied perspectives. After coming out of the illness closet, I am much more relaxed because I can own who I am, in sickness and in health.  It’s also enabled me to relate to others on a more intimate level because I realize now that their “normal” isn’t that normal, either.

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5 Things to Remember in a Myasthenia Gravis Crisis

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June is myasthenia gravis (MG) awareness month. For those that have never heard of this rare, neuromuscular autoimmune disease, here are a few fun facts about it:

1. It can make the body go weak at any time
2. Double vision and droopy eyelids are a key trait
3. Can cause severe fatigue in the neck or limbs
4. Can affect breathing
5. Worsens as muscles are used

If you have MG like me you know that some days are great while others just don’t go as planned. One moment you are on your game and going about your life like the warrior you want to be, the next you are in a myasthenia gravis crisis curled up in fetal position in bed. It’s just the way it goes.

I had one of those moments a couple of days ago. I woke up, ran some errands, got coffee with my daughter, picked up the house, got take out for dinner then sat down to eat as usual then sat down to eat. I could feel myself getting weaker throughout the day but thought I could negotiate my way out of it. The conversation in my head went like this:

Me: You’re ok. Just finish dinner and you can lay down.

My Body: I’m not ok! I’m not ok! Mayday! Mayday! Holy cow we are going to die right here in the middle of the fried rice. Abort! Abort! All hands on deck. This is over!

Me: Calm down body. You are going to be fine. You are just tired and we waited to long to eat. Let me finish dinner and we will go to bed early.

My Body: No! I’m melting! We are starting to have a problem breathing and we will probably have to go to the hospital, probably in up in the ICU with that terrible nurse. Are our papers even in order? Where’s my purse? Or maybe we will faint again. Oh God, I think we are going to faint! I hate fainting. Wait, I think we just lost our legs. Did you feel that too? That means the arms are close behind. Oh no! Save yourself! This is getting real right now! We are going down!

If you haven’t noticed, my body is a bit of an alarmist — and very much a drama queen. Although it has plenty of history to warrant post traumatic stress syndrome (PTSD), as we have been through a lot over the past seven years. It had been a long time since I’d had a complete system failure, so I guess I was due. I had ignored many red flags telling me it was coming.

My MG crisis started with a swirly, dizzy feeling in me head. Next came the feeling that I couldn’t take in a full breath. I decided to abandon my chow mien and head upstairs to bed, but couldn’t get out of my chair. As my husband was helping me up, my arms gave out as well and I started falling to the floor. My daughter was close by and caught me and helped her dad get me to the couch. By then I was covered in sweat and unable to breathe. After a few minutes the three of us made it over to the stairs (side note: my next house will most definitely be a one story). I butt-bumped up the stairs (sat down on one step and went up backwards on my butt, pulling each leg up as I went) with my husband pulling me up each step until I made it to the top. Then I did an army crawl to the bed where he lifted me in.

Devastating for them. Humiliating for me. I will probably have to put my daughter through therapy.

Unfortunately, it is what it is. There isn’t much you can do about it. If you haven’t been though a crisis before, good for you. If you have, you know what I’m talking about.

Although not all myasthenia gravis crises are created equal, there are a few things we should all do when one hits. Below are a few tips to keep you safe and sane:

1) Don’t panic. If you feel yourself going off the deep end, don’t make it worse by panicking. Stress sends cortisol into your blood stream which amps up your immune response even more. It sounds counter intuitive, but lean into your crisis like a karate master. Tell yourself, “OK, this is unfortunate, but I will be fine tomorrow so let’s just write this off as part of the ride and deal with what is happening now, without projections into the future.” Staying present will help you stay a little calmer. Don’t think about all the things you may miss later because of the crash.

2) Check in with your body on a regular. I know my body pretty well because I’ve had to get to know it, many times. We aren’t always friends so one thing I have learned is to check in and read the signs. If my legs aren’t working well I know my balance will be off soon. Next goes my breathing and so forth. All these signs means it’s time to sit down for a little while. Usually that is all I need but when that doesn’t work, I go lay down in a quiet room. By doing the little check-ins, with a little experience I’ve learned to read my body and navigate my life with this disease.

3) Have your medical information up to date. Do you have a medical card? Bracelet? App on your phone stating your condition and all your insurance and doctor information? If not do it now. And by now, I mean right after you finish reading this post. Don’t wait or put it on your to do list because you never know when you will need it. I passed out once at a farmer’s market by myself and that little app on my iPhone kept me safe and the people around me informed. By the time I woke up in the paramedic truck (so embarrassing), I was already on the way to the hospital with my doctor standing by. First responders know where to look on your phone and it doesn’t require a security code to get the information they need. Make sure you have all the necessary information ready for anyone that may need it so if you go in to crisis, you have your back.

4) Ask for support and be grateful. I am not a fan of asking for help, but when I know things aren’t looking good for me I’m not afraid to ask family, friends and sometimes total strangers for help. I have never been turned down so far. Don’t be a hero. If you need help, ask. If you get it, say thank you to those responding. It’s really easy and I’ve found that people are overly generous with their care. I’ve also tried to offer help to someone that I knew was struggling only to be met with a rude, aggressive response. Don’t do that. People are only trying to be kind. Also, sharing in a common humiliation makes it not so humiliating. Join a support group of people who truly understand and can laugh and cry with you after you are done with your crisis. We’ve all had some pretty bad ones (like passing out in a farmer’s market and having the hummus lady try to give you mouth to mouth). Sharing common experiences makes us all feel a little less alone in our struggles. If you don’t know where to look and want an empowering group of folks that never give up their battle, join my private FaceBook support group the Wellness Warrior Tribe. We get it.

5) Prevention is the best treatment. After many years of dealing health issues, we can get a little sloppy. Make sure you know your triggers and are taking care of yourself all the time, not just when you feel unwell. Be mindful of your diet and self care on a regular basis. I should have know better with eating Chinese food, as MSG is a huge trigger for MG but I did it anyway. Dumb move on my part. It’s like being on a plane during an emergency situation. You put the oxygen mask on you first before you put it on anyone else. Taking care of yourself and staying true to what works and rejecting what you know isn’t healthy for you isn’t a luxury, it’s a necessity. You can’t beat the system on this one. The house will always win.

Follow this journey on Lisa Douthit

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To the Family Member Who Told Me I Didn’t Need My Cane

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The other day I was dropping off gifts at a relative’s house. I just had a very important doctor’s appointment, which went extremely well. I was very nervous leading up to it; I never know if I’m going to get good news or bad news. It’s a roller coaster.

When you have five chronic illnesses, life is unpredictable. Ever since I was diagnosed for myasthenia gravis (a rare neuromuscular autoimmune disease) in 2008, I have been working on rebuilding my life with medical procedures, physical therapy, medications, nutrient therapy, nutritional supplements, and, most recently, starting a non-GMO diet.

That year, I went from doing yoga five days a week to not being able to feel my legs. I was bedridden for over a year. I was given a 50/50 shot of living.

Jessica Gimeno
Jessica.

Today, I carry a cane. There are times when I lose feeling in my legs or on one whole side of my body. I have no idea when those moments will happen.

As I dropped off the gifts, I explained to a family member I was coming from a doctor’s appointment. I loved her makeup that day and told her she looked wonderful. My family member said, “You look great.” I said thank you — I did look great that day. Great lipstick and good news will do that. Then she followed it up with, “You don’t need your cane. You should get rid of that.” Sigh. I know she meant well, but still, it stings.

Here’s the truth about chronic illness: Some illnesses are invisible (although some might argue that an illness that requires a walking aid is not invisible). I also think there’s another source of misunderstanding: The strategies we employ to manage our illnesses often make us feel or look better to the point where people assume our illnesses are over.

The reason I didn’t hit the ground when I lost my balance twice at a store last October? My cane. The reason I didn’t fall down when I left my house and immediately stepped into two feet of snow? My cane. Physical therapy has helped a lot, but even my physical therapist says I should use my cane. I think he’s the expert on this subject.

I had a similar conversation years ago regarding my bipolar 2. I was diagnosed with bipolar disorder at the age of 18. It wasn’t easy; it was a long hard road, struggling with suicidal thoughts and uncontrollable depression to becoming happily stable and developing creative strategies for successfully managing my mental illness.

I graduated cum laude from Northwestern University with a B.S. in communications and a second major in political science. I learned to follow through with things like sleeping on time, seeing my therapist regularly, adhering to prescribed medications and exercising.

A few years after college, I was considering a big transition that would involve moving away. While discussing this with a friend, I told her I was considering how it could affect my depression — in both positive and negative ways. She replied, “Don’t think about that! You don’t have that anymore. That’s in the past.” To her it seemed my bipolar disorder was over because I had gotten better. But the reason I am better is because I practice mental health hygiene every day. I have to work at it.

In addition to myasthenia gravis and bipolar disorder, I live with polycystic ovarian syndrome (PCOS), asthma and psoriasiform dermatitis. People ask me what it’s like to live with five diseases. As I described in my TEDx Talk, it’s like this: I see myself as Rocky and my five illnesses as Rocky’s different opponents. Every day, I get up and step into the ring with Apollo Creed (bipolar disorder), Ivan Drago (PCOS), Clubber Lang (asthma), Tommy Gunn (psoriasiform dermatitis) and myasthenia gravis (Mason Dixon). Each morning, I wake up in tremendous pain, and then I play “Eye of the Tiger,” put on my boxing gloves autographed by Manny Pacquiao and pray for strength to survive another day.

I know many people with chronic illnesses who are also going to war every day. Chronic illness is like running a race with no finish line. Comments such as, “You don’t need a cane,” “You don’t have that anymore” or “You shouldn’t be parking in the disability spot” diminish our daily challenges. Worse yet, they amplify the loneliness of our journey. I wish people would just listen to people with illnesses and disabilities. And believe us.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on Fashionably Ill.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Lived a Double Life While Dealing With My Chronic Illnesses

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When I say the words “living a double life,” many people with chronic illnesses may know what I mean. I’m talking about the face you put on every day to “pass” among the healthy and try to live successfully among them, no matter how much your body refuses to comply.

In September 2014, I had to abruptly stop teaching because my chronic conditions — postural orthostatic tachycardia syndrome (POTS) and myasthenia gravis — had become too disabling to even care for myself. I had a moment of epiphany when I realized living this double life had only led to more challenges. I began to be honest with everyone for the first time in years. I wrote these words to myself to understand why learning to live authentically, and with acceptance, was the only path forward:

Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, existing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that’s happening around me. I’m still figuring this one out. I know others who are ill or disabled who are facing challenges with living authentically. This is a strange ride indeed.

I realized I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bedridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else.

I’ve been pretending to be one of them — living among the well who talk about traveling or doing yard work. Pretending not be on an endless cycle of hospital visits. Pretending not to have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach.

But as I’ve been getting progressively worse this year, I’ve maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the willpower to keep up the charade.

This is a good thing because now I can try to live a more authentic life. I’ve been lying to everyone and to myself for a long time — lying about what I’m really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. BS-ing is not really my deal. But I can put on such a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough, maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s OK. I still use my polite words, “please” and “thank you.” I’m grateful for the friends and family who have shown their true colors and stood by me, and I’m grateful for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means not driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family and myself about what I’m able to do moment to moment. I’m going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I’ll use my wheelchair when I leave the house and not pretend to be able to walk and then predictably fail. I’ll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means I no longer care so much what others think, and that is incredibly liberating. I can deal with the stares when I use my wheelchair. I can now pluck up the courage to say, “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast, and I’m going to stop fighting it so hard. It means dealing with it in silence less and maybe becoming in tune with the world around me once again. The future is uncertain, but I’m getting more comfortable with that. I’m gaining a lot of life experience in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I’m a fighter. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids and chocolate close by.

woman in a wheelchair

Follow this journey on Kind of Broken.

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How This Teen With Cerebral Palsy Made Sports History Without Joining a Team

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Nathan Mattick has always loved soccer.

The 19-year-old from Cheltenham, England, dreamed of one day playing on a team, but because he has cerebral palsy and uses a wheelchair, playing for one of England’s club teams wasn’t possible, according to The BBC.

So, Mattick set out to get involved with his favorite sport in another way — he decided to become a soccer referee.

“I looked at the referees [on TV] and I thought, ‘Well, I’m in a wheelchair, but why can’t I do it?‘” Mattick told the BBC in a video.

Mattick’s next step was to contact the sports department at National Star College in Cheltenham, England, where he goes to school. He then got in touch with Gloucestershire Football Association where he completed a course and began training.

Now, Mattick is the first person who uses a wheelchair to become a certified soccer referee in the U.K., Mirror reported. The teen is qualified to officiate both indoor and outdoor games with able-bodied athletes as well as athletes with disabilities.

“My motto is, disabled people can still do exactly what able-bodied people can do, but in a slightly different way,” Mattrick says in the video below from SWNS News in the U.K. “I hope disabled people can get engaged in something they’ve always loved to do. Go ahead with it, you can still do it.”

Learn more about Mattick’s story in the video below.

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