The Truth About Life With Ill Health I Realized While Waiting for My Doctor

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Yesterday when I was waiting for my turn to meet the doctor in the madly crowded outpatient hall at AIIMS (All India Institute of Medical Sciences), I looked around at all those waiting with different ailments and different expressions on their faces. After almost three hours of waiting and staring at all those around me, I realized what underlines us all is that we must all live our lives as well as we can, no matter what comes our way.

As human beings we have very little choice in the matter of coming into this life. We don’t get to choose our parents, our siblings, our relatives or our homes. From the moment we arrive we are learning how to cope and make the most of whatever we have and whatever life hands us.

While waiting in the queue I saw there were three more patients struggling with myasthenia gravis, all in their late 5os and accompanied by their spouses and sons/daughters. I was the only one in the mid-30s and was accompanied by my husband and two aged fathers. At that moment I realized that although we may share many common experiences from an ailment point of view (the three hours of waiting had weakened our backs and almost made us put our heads between our knees), we are still unique in this world. Whatever happens in our lifetime is still a life lived. I further realized that our bodies are merely the vessels and receptacles for all our life’s work and dreams. Our passions, our loves, our interests and our experiences all reside at the center of our being. Regardless of what happens between birth and the final end, what matters at the end is the life we lived.

Sometimes the plans and hopes we may have for our lives can be changed forever and in an instant. But still, it’s the only life we can truly call our own. I find this thought very comforting when I feel lost in the challenges I may be facing and am questioning what purpose and meaning my life may have. It seems more fair to me when I think that all lives are a mixture of chance, choices and constant change. It is somewhat ironic then that it is when we feel in control and in command of our lives that something will happen to remind us we are not. We can never take anything about this life for granted, nor allow ourselves to think we are superior to another life by virtue of our current circumstances.

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I would never have dreamed of this life and where it has taken me, what I have seen and what I have felt. When I look at those around me and those I know and love, I am reminded that they don’t know what awaits them around the corner either. I sincerely pray and hope it’s not pain, suffering or misfortune, but these things could happen to any one of us at any second. (Just as something pleasant or fulfilling may also be a moment away.) Yet we sleep, we eat, we breathe, we dream and we do what we can from day to day, despite the odds and chances of whatever lays ahead.

To those like me who must bear the burden of pain and hardship caused by ill health, it is not an easy reality to face and there are so many times I have wished it wasn’t my reality. I wish I didn’t have this illness, but I guess that wasn’t to be my path. Despite that, I still have my one and only life. Just as precious as yours. And just as worthy as the next person’s.

Who will love me, who will meet me, who will value me and who will remember me are things that I may not have a lot of control over. But, how I love myself, who I remember and how I live out my remaining years will be up to me and the great unknown. I still intend it to be a life lived. Now I am true to myself and my passions. I have accepted all of my past and made a life out of what I’ve been given and what my heart truly enjoys.

Have a wonderful weekend and live your life to the fullest!

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15 Things Not to Say to Someone With Myasthenia Gravis

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I have been wanting to write this for a while, to get it off my chest…  I have heard all of these at least once and they have really stung. Some of them I am learning to brush off, but some still make my blood boil. So this is my vent. It is often my responses I wish I had the guts to say to those who have said it to me.

You may think you are being kind or supportive, but know that more often than not we are sensitive and embarrassed by our myasthenia gravis. Words can be very hurtful, and stay within someone’s heart for a lot longer than you may realize.

We are all beautiful individuals — some of us are just more “special” than others!

So here it goes…

1. I know exactly what you’re going through.

No, I can pretty much guarantee that you don’t. You don’t know what it’s like to battle to get your words out, choke on your own spit or have difficulty getting up off the floor. You may have some understanding through us explaining what we are going through, but you do not know what it is like to live with MG. And everyone who has MG is different, and has varying degrees of symptoms — nobody is the same, so we don’t even know what the other snowflakes are feeling!

2. Nobody could ever love you with this disease.

Yes, I have actually had an ex say this to me. It broke me. Still to this day it lies heavy on my heart, and every fight I ever have comes back to these words that were spoken over my life. I often distance myself from others as I would rather not become too close to anyone than lose them (friendship or otherwise) due to the fact that they cannot handle my disease. It is a heavy burden to carry, and try as I might I cannot forget it. Even if you say something like this in the heat of the moment it cannot be taken back. I am so grateful for my wonderful husband, family and friends that have proven that they can love me with my MG and will be my pillars of support through the good and the bad. I am truly blessed.

3. You need to be more positive.

This one irks me like you cannot believe! I am a very positive person. I laugh throughout life and always try to see the best in every situation. Yes I was given the short straw with regard to this illness, but if I hadn’t gone through everything I have, I wouldn’t be the person I am today. But sometimes I do have my down days. Sometimes I will cry for anything. Some days I am sick of being sick. I battle with hearing bad news about my illness or my medicine. But I don’t need to hear that I need to be more positive! I try every day to see the good in every situation I find myself in. I try to greet others with a smile, make them laugh and show compassion towards everyone I meet. I would love the same in return! Help lift me up when I am down. Make me laugh. But please don’t tell me to be more positive!

4. It’s not that bad.

Um…  Sometimes it is! Have you lived with this? Have you wondered when things will get better? Have you thought you were in remission, only to end up back in ICU? Have you sat on your bed unable to stand up or brush your hair or pick up your bag? I agree that some days are absolutely fantastic, but when I say I am having a bad day this is probably because it is quite awful! Many of us snowflakes keep smiling and positive for as long as we possibly can, and we are probably dealing with a lot more than you possibly realize. We live with this every day. We try cope with it to the best of our abilities. We don’t use it to our advantage or enjoy being sick.

5. You need to get over this.

I would love to! I would love to not have to put 22 tablets down my throat daily. I would love to be able to walk up stairs without having to physically lifting my legs by the time I get to the top. I would love to not slur my words by the end of the day and have people say to me, “Shame, are you tired?” We do not put this on! And we would love to be “normal” like everyone around us.

6. You don’t look that sick.

No, probably not. Except for maybe if you see us late at night or if we are really tired, and our eyelids start drooping or we can’t smile properly. But MG is a nasty disease that drains all our energy and makes our muscles forget their job. We may not look sick, but we are fighting a constant battle with our own bodies.

7. Just drink water/eat yogurt if you are battling.

Shame. The people who have said this to me have really just been trying to help. They most probably did have my best interests at heart but just did not understand. When you cannot swallow, it means you can’t swallow anything — sometimes not even your own spit. I can count many a time where I had to use paper towel/toilet paper to soak up my saliva as I kept choking on it and it was dribbling out onto my chin. So drinking water or eating yogurt is not going to help the situation — I would probably need more paper towel to clean up the mess if anything! When I am having a good day this is perfectly fine, but when I am battling this is near impossible…

8. You need to get out more.

Walking makes me tired. Working makes me tired. Talking makes me tired. Flip sometimes even putting on a happy face makes me tired! So when I am feeling weak, the only thing I want to do is climb into my bed and sleep. I wish I could go out more. I wish I could spend more time with my friends and enjoy parties with them. I thrive off other people and their energy. It hurts when people say this to me, as I used to be very outgoing and a real party animal. Now staying up after 10 at home is a big thing! I often have to cancel/postpone plans as I realize my body just can’t cope and I cannot take the risk of having another relapse. On my good days I do as much as I can without overexerting myself (my mother may disagree here…) and I always go to bed much happier. I will come out whenever I can.  But please understand that my health is my number one priority and canceling plans hurts me a lot more than it hurts you. Please don’t exclude me from everything, though — I do feel like I have missed out on a lot with friends due to my MG and this hurts. Perhaps make plans for during the day over a weekend, or on a public holiday.  If I can’t make it at the last minute, be understanding. Don’t fight with me about it!

9. It must be nice to sleep so much and have everyone run around after you.

I have had plenty of people say this to me. Even some of my own family! I think some people take advantage of being sick, that is true. But I hate it. I hate that my husband has to carry in the groceries for me. I hate that I can’t help move the furniture around at work or home. I hate that often over a weekend I have to take an afternoon nap to see me through the day. I feel like I am missing out! I hate having to ask people for help, or even to admit that I cannot do something on my own. It makes me feel inferior and makes me have to acknowledge my illness. I wouldn’t sleep so much if I didn’t have to, and I would do everything for myself if I could!

10. If you exercised more, you’d get fitter and feel better.

Overuse of muscles in a person with MG makes them give up. So in other words, exercise actually makes us weaker! We can do basic exercises, but only when we are feeling strong and can cope with it. Sometimes walking from the house to the car is enough. I have tried to go to a gym class once before and fell on the ground unable to get up. My muscles had had enough and I struggled for ages afterwards with weakness all over my body.

11. Everyone gets tired.

Yes, everyone does get tired. But tired for you is very different to tired for me. We all cope in varying ways. Myasthenics get tired from a normal day at the office! Realize what it is that our illness does to us before you say such things.

12. You’re just having a bad day.

Hmmmmm…  Perhaps we are. But probably not. It is probably a normal day for us, but the first time you have noticed us letting our front down unable to keep up the facade any longer. Perhaps we are finally letting you in to see what we live with. Perhaps we are just having an “all fall down” kind of day. You can’t really tell us what kind of day we are having, though. You don’t know the battles we are fighting or what we are coping with on a daily basis. We say we are OK but that may just be because we are too tired to explain how we are really feeling.

13.  It’s all in your head.

Really? You think I would make something like this up? You think I enjoy this? Do you honestly think we would want this? I would not wish this illness onto my worst enemy. But it is very real. It controls my life. It shows me what I can and cannot do. It has built me into the person I am today, but it is most definitely not all in my head! It is not psychosomatic.

14.  There are people worse off than you.

Absolutely. I agree. And I pray for those people every day. But when people say this to me, it is said in a condescending way that makes me feel stupid or like I am putting this whole thing on. I am grateful for all I do have in my life and I do not need more negativity coming my way!

15.  Maybe if you lost some weight you would feel better.

Grrrrr! This one grates my carrot. Yes, I probably am looking bigger than I did last time you saw me. It is most probably as a result of all the medication I am on. These cause water retention, which in turn causes “moon face.” It is not attractive. I hate having pictures taken of myself and seeing how big I look. I am trying so hard to lose weight, but it is not easy. I cannot exercise, and I try to eat what I can — depending on how my swallowing is at that particular moment. But telling anyone, especially a girl, that they need to lose weight is like poking a sleeping bear. Not clever. I would love to lose weight — and I am trying. 

Sorry for this rant, but I needed to get it off my chest. For so long I have simply been accepting what people throw my way. I just want to create awareness for what people say. Watch your words. They can hurt. They can be taken the wrong way, especially when the other person is having a sensitive day. Every day we are fighting a battle. We try so hard to be strong and make it through the day.

Support us.

Love us.

Make us laugh.

Keep us positive.

Give us a hug.

But most of all, try to put yourselves in our shoes.

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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

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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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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