February is Rare Disease Awareness Month, and something that is very close to my heart. In fact, it is the reason I started blogging and sharing on social media. You see, in 2004, I was diagnosed with a rare and potentially life-limiting condition called Myasthenia Gravis.
Myasthenia gravis (my-us-THEE-nee-uh GRAY-vis) causes muscles under your voluntary control to feel weak and get tired quickly. This happens when the communication between nerves and muscles breaks down.
There’s no cure for myasthenia gravis. Treatment can help with symptoms. These symptoms can include weakness of arm or leg muscles, double vision, drooping eyelids, and problems with speaking, chewing, swallowing and breathing.
This disease can affect people of any age, but it’s more common in women younger than 40 and in men older than 60.
Mayo Clinic
To put it simply, the message between my nerves and muscles gets blocked. For example, I will know that I need to swallow, but my muscles just won’t cooperate. It affects all my muscles – from smiling, to speaking, to swallowing, to chewing, to closing my eyes, to walking, to carrying things, to washing my hair… You get the idea. It’s an awful disease, and the worst part is that no two people with Myasthenia Gravis are the same.
I once met a man who had Myasthenia Gravis (MG) and his only symptom was double vision in his one eye. Otherwise he was perfectly healthy. He took one tablet when necessary, but otherwise he was able to function perfectly. I, on the other hand, experienced it in every muscle and it got to a point where I couldn’t even bath myself, get up off the floor or even swallow my own saliva. I have had every treatment available in South Africa, and unfortunately my illness progressed into Refractory Myasthenia Gravis, which means I was non-responsive to treatment. That is when we started researching what is available overseas and I found a doctor who was willing to listen to me and assist with a stemcell transplant in 2019.
I digress.
This blog is not about me. No, you see, I have (along with many of my Rare buddies) heard all kinds of things from our friends, family and members of the public. I originally wrote this a few years ago, but have updated it as I have matured, heard some that are worse than back then, and I am also healthier so can look back on my life with Myasthenia Gravis with more of an understanding.
So here it goes…
15 Things Not to Say to Someone With Myasthenia Gravis
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 saliva 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 Myasthenia Gravis. And given that 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 people living with Myasthenia Gravis are feeling or experiencing!
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 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.
But yes, the burden of loving someone with a rare disease is heavy. You are not just their partner, but also their caregiver, their voice and their advocate. You don’t get a day off. Myasthenia Gravis does not just affect the person living with the disease, but the whole support system of that individual. So finding someone who can love you when you are strong, carry you when you are weak, see your heart and continue to love you is a true gem. Finding THAT person is rare.
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 – or nothing. 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, and 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! Feeling my feels is the best way to move forward.
4. It’s not that bad.
Um… Sometimes it is! Have you lived with Myasthenia Gravis? 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 living with a rare disease 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. And it really is bloody awful.
5. You need to get over this.
I would love to! I would love to not have to put a handful of 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! In fact, we are probably hiding the worst of what happens in our body from you. 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 Myasthenia Gravis 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. And that is why we fall under the “invisible illness” umbrella.
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 at my core I am 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 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 Myasthenia Gravis 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! I have probably done a good enough job myself at hauling me over the coals…
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 others have 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 controls so much of my life. 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 Myasthenia Gravis 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. I am lucky that I am stronger now and can go to gym, but I also know my limits and don’t push my body beyond what it is capable of. Slow and steady wins the race – especially with my marshmallow muscles.
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. People living with Myasthenia Gravis get tired from a normal day at the office! Realize what it is that our illness does to us before you say such things. (Look up the spoon theory for a great explanation as to using our spoons thoughtfully and not wasting them).
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? Do you think I would make something like this up? Do 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 as per a regular “healthy” person, 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. But being healthy is my number one priority.
Love your rare friends, whether they live with Myasthenia Gravis or something more. Support them. Speak kindly to them. And not only them, to everyone around you. For we are all fighting a battle that nobody else knows about…
