A pink flower is weeping in the sun.

Oh, It’s Just an Excuse

Lately, it feels like every time I decline an invitation, or say I can’t do something (which by the way it KILLS me to say I can’t do something), or complain about not being able to go somewhere because of the heat, I’m being judged.

Not an excuse

I have even heard people chat about me when they didn’t know I was nearby or in hearing range, say that I’m just using my MS as an excuse. Think of this as a follow up to my article, Last Minute RSVP.

An excuse… let that sink in, I mean really sink in. They’re insinuating that the incurable disease that I suffer from on a daily basis I’m using as an excuse.

I would be honest

Now, the people that state these kinds of things don’t really know me, because they would know better than that. If I don’t want to do something or go somewhere, I’m just not going to go. I will tell you that I just don’t want to go, flat out. I know that most people respectfully decline a lot of things, but sometimes I’m just a bit too blunt, and my filter doesn’t work.

These people that make these comments aren’t even worthy of a response from me because they don’t matter in my life if they are going to be rude and disrespectful. But I have all of these people that also have MS that reach out to share with me things that happen to them and IT’S NOT OKAY.

Accepting the invite

When it’s over 100 degrees outside and I’m invited to a fully outdoor event, meaning there is no way to cool off nearby, I decline because of the heat. People then say I’m using my MS as an excuse… do you want to know what would happen if I DID go? Let me share that with you because I feel like some people need to have their eyes opened up.

You don’t know how it feels

I would show up and be okay for probably 30 minutes. I would then start to overheat and need to sit down, if there is seating. I would need to be chugging water to stay hydrated, instead of indulging in an adult beverage like everyone else. When I sat down, I would become very fatigued and probably be almost falling asleep in the chair. This is all within an hour of being at the so-called event.

Someone with a chronic illness like Multiple Sclerosis dealing with fatigue as a symptom is not the same thing as a healthy person being REALLY TIRED.

I’m not being anti-social

So then what? You’re going to look at me and say, “She shouldn’t have come if she was going to be anti-social and sitting down the entire time.” This is NOT an assumption either, as I’m speaking from experience. But sitting there doesn’t stop the torture, because, at some point, I’m going to have to get up.

When I do get up, you’re going to look at me and wonder if I had alcohol in my water bottle instead of water, because I’m walking funny. I might even stumble a little bit, and in your mind, I’m confirming your suspicion that I was drinking alcohol instead of water.

What you don’t see

However, what you don’t see is that my legs feel like they each weigh 110lbs. and my leg muscles are having tremors that won’t stop and are annoying, which at times leads to muscle spasms where it makes it impossible to move.

I need to leave

Now I’m going to have leave early because my body just can’t take it anymore. You can sit there and gossip about what happened to me, but my torture isn’t over yet. It’s only over in your eyes. When I get home, I go to bed because I have no energy to do anything else. I will want to sleep for two days most likely and have trouble getting around days after I went to the event. This also doesn’t take into account if there were a lot of people there, did I get a migraine from the sensory overload?

Not just a problem in the warmer months

This can also happen in the cooler months as well, so don’t be fooled. I can get overheated being inside at times. I probably pushed myself too much just preparing to go to an event (shopping, getting my essentials planned and packed up aka “The Ball and Chain of MS”. Then walking around the event, etc. It’s completely exhausting.

A new perspective

If you haven’t read the “Spoon Theory” by Christine Miserandino before, I highly recommend it. It’s a good way to look at what it’s like living with a chronic illness and sharing with others that do not understand.

Don’t make assumptions

So what is the point of this article/rant? DO NOT ever assume someone is just ‘using their illness’ as an excuse, ever. It is never okay, and it will never be okay. It’s like assuming that we’re just ‘abusing the system’ by using our handicap parking pass when we “don’t look sick”. People that don’t live with what we do on a daily basis will never fully understand, and I hope they never have to.

My body is against me

To put it simply, my body is against me. It dictates what I can and cannot do on a daily basis, even if it’s against my wishes. With that being said, I’ve come to realize that the only thing strong enough to hold me down, is myself. Literally.

I don’t want to deal with what I do on a daily basis; therefore, I would NEVER use my illness as an excuse and/or cop-out.

I know my body, I know my limits, I know what I can and cannot handle. You are not me, you do not suffer through what I do, so your opinion and commentary are not needed, ever. 

xoxo

Ashley Ringstaff

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (15)
  • DJDave
    4 months ago

    Ashley, you are so spot on about this. What you describe is exactly what I go thru as well, and I feel like its a never-ending struggle to make people understand this real problem with MS and Heat.

    I have dragged myself to hot-day events out of pressure or guilt, only to regret ever having done so. The consequences of going somewhere you know you shouldn’t have (as you describe) just seem to lead to more depression and feelings of worthlessness.

    Thanks for sharing your experience. At least we know we’re not alone in this dilemma with MS and heat, and we’re not over-analyzing or exaggerating the experience.

  • Ashley Ringstaff moderator author
    4 months ago

    Hey! Thanks for reaching out. I’m glad you enjoyed the article.

    I feel that MS is so very hard to describe to people that don’t “get it”, but I try my best.

    I tell those surrounding me that they don’t know the struggle that I go through on a daily basis just to function, so I ask them not to judge me for my responses or actions… because I’m responding for the best interest for myself and my health.

    xoxo
    Ashley Ringstaff

  • Dorry
    5 months ago

    Many people can be so intolerant and immature. I wouldn’t bother explaining to them how you feel. OH Ashley I like your comment about your legs feeling like each one is 110lbs. Mine do look like 110lbs and I use 2 walking canes. I have a gym in the garage and can’t use it due to being in so much pain. I even bought a special recumbent bike for people with arthritic knee problems but can’t use it. I keep being told that I need to exercise. It is good for me. I would feel better. I so wish this person and many persons I know would go through what I go through as this is the only way anyone can understand when they walk in my shoes and my experiences. I often wish some people would mind their own business.
    I like your story as it is authentic and to the point. When my daughter faces comments from people that affects her self esteem. I say if 10 people all had different opinions about you. Which one would you believe. There are many people that we just don’t need in our lives if they can’t be supportive and understanding.

  • Ashley Ringstaff moderator author
    4 months ago

    I’m sorry to hear that you are unable to use your gym. I started with some bands just to get me stretching a bit. It wasn’t what I used to do with exercising, but it helped me feel better personally.

    You’re right, there are people out there that just don’t need to give us their opinion. I’ve learned throughout the years that there will always be those few that INSIST on giving me their opinion. They act like they’re an expert or something…. whatever.

    I’ve had many people tell me to exercise and I’ll feel better. I do exercise now-a-days.. but it takes A LOT for me to even begin and by the time i’m done… I’m exhausted. They will never understand. You don’t ‘get it till you get it’.

    xoxo Ashley Ringstaff

  • ClumsyMumsy2
    5 months ago

    Some days like today, I fear stopping or I may not be able to start up again.

  • Ashley Ringstaff moderator author
    5 months ago

    Yes! I can totally relate to this. If I’m in the middle of something I freak if someone interrupts me because I almost always forget what I was doing, or where I was, etc.

    xoxo
    Ashley Ringstaff

  • ClumsyMumsy2
    5 months ago

    Amen

  • mrsaristotle
    5 months ago

    Oh boy yes i got this all the time. I cant go to a wedding reception in the city at 7.30pm jeez i am in bed usually asleep by 8pm.

    I cant travel miles to a DO i would be exhausted they dont get it. They think i dont want to go, I do, but the effort is way too hard.

    I have Primary Progress MS and never catch a break. When we had our hot summer in UK i felt so ill most days i thought they were my last.

    Every ounce of my energy now goes to stay alive and upright and at least for me to do something like walk to my loo.

    I gave up explaining to family, if they dont like it TOUGH. Its my life they dont have live it. I do. Every day is another challenge. They have no idea how every day I push myself just to stay alive or want to be bothered.

    I get sick of people saying oh well at our age 67 we do get tired, blah blah blah.

    If I didnt have MS what they fail to realise is this, i would be back at work. I loved my job teaching I.T. to seniors and young mums.

    I would still be driving.

    I would still be going out to cinema, restaurants, visiting, walking my dog, still have my chickens.

    I mean hell i dont want to be like this I HATE IT.

    Do they really think that I want to be a hermit.

    The saying goes walk a mile in my shoes, i dare you. x

  • Ashley Ringstaff moderator author
    5 months ago

    People honestly won’t get it, till they get it. That’s the harsh reality of it. I wouldn’t wish this on my worst enemy, but their rude comments or just speaking to me in certain ways is just rude.

    We already deal with enough stress and struggles, I really don’t like it when people add on to it.

    xoxo
    Ashley Ringstaff

  • DeniseC
    5 months ago

    A great tip from an acquaintance a number of years ago was to say that “I have other commitments on that day”. The comment worked a treat and I still use it today.

    Hubby and I made a commitment to get the most out of each day. He makes me laugh as he always posts the location on Facebook. Sometimes it is just the coffee shop 2 blocks away! Before you know it everyone thinks that I am constantly out and about.

    Heat intolerance is so deflating. eg. You into the supermarket in the freezer section and it is a breeze to walk. You then take the groceries to the car wonder whether you will make the distance.

    It is a hassle trying to navigate this blasted disease.

    Hang in their warrior.

  • Ashley Ringstaff moderator author
    5 months ago

    Oh I love that response! I’m going to have to use it in the future.

    So glad that your hubby is supportive and makes things fun!

    Best,
    Ashley Ringstaff

  • Grant1270
    5 months ago

    Love the article. I sometimes get looks when I decline on things like all day fishing trips. It gets old having to explain that I can’t be out on a boat miles from the shore in the heat of the day… Thanks for the read…

  • Ashley Ringstaff moderator author
    5 months ago

    Oh man. I can’t even imagine doing an all day fishing trip… I for sure couldn’t do that anymore… and I do love my fishing.

    Best,
    Ashley Ringstaff

  • Mascha
    5 months ago

    What a great article 🙂
    I go through this to some degree. My family were like this and when I say some degree it’s because I’ve stopped contact. They said I did not have MS and made it as an excuse.
    I have the same issues with heat and events. It makes it extremely hard to try and fit in. And yes people do not understand.
    Couldn’t have written it better x

  • Ashley Ringstaff moderator author
    5 months ago

    Thank you so much! I’m so sorry to hear that your family isn’t supportive of you and caring enough to be there for you.

    At least we all have each other.

    xoxo
    Ashley Ringstaff

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