I wrote this blog a few years back and thought it was still pretty relevant… Even though I am nowhere near as sick with Myasthenia Gravis as I was when I wrote these, there are still certain triggers for me that cause heartache! 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.
People may think they 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 try to live my life with kindness in my heart. 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, as well as working with them on a daily basis through my work with Rare Diseases SA. 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.
This post is for every brave rare warrior fighting their own battle that others do not understand. 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.
