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The Importance of an Invitation

The Importance of an Invitation

For many people battling a chronic illness, like Multiple Sclerosis, social opportunities become increasingly difficult to attend. This can become especially problematic in the warmer months, as many of those with MS suffer from some form of heat intolerance or during the holidays, when large gatherings and travel prove problematic. Friends and family begin to realize that we either have to cancel our plans at the last minute or simply outright decline many of the invitations we get. Eventually, as we are forced to continually be unable to attend functions, the invitations can start drying up. This can be disastrous for someone with a chronic illness.

Attending isn’t easy

No one feels worse about not leaving the house than us. Trust me when I say I wish I could be at every single event my friends and family have. I even crave it because I can attend so rarely. When your body forces you out of action so much, even attending events that would previously seem annoying becomes a coveted activity. I’m sure there are many times where it feels like we are simply “blowing you off,” like we aren’t interested and we are making excuses. I assure you that is not the case. If I say something and it sounds like an excuse, that’s only because I’m embarrassed to, once again, explain that my body is failing me. That some symptoms suddenly increased, maybe even because I was excited to be joining you (“happy stress” can be difficult for us, too). Let’s face it, anytime you have to constantly give the reason behind anything negative, you begin to feel like it’s unbelievable.

It doesn’t end with the cancellation

While your activity will no doubt go on without us, we are left yet again at home, feeling disappointed. Our sadness isn’t only because we can’t attend, it’s also because we feel like we’ve let you down. Whether we always show it or not, we are all very aware of how much of an inconvenience our illness can be on others. Feeling like you are disappointing others when you have no real way of controlling it is an extremely hard thing to live with. That is especially so when you have a lot of time to sit around and overthink it. Those feelings of disappointment are made worse when we are made more aware of what we see as our shortcomings. Off the cuff remarks about our attendance history is certainly one way to make us feel even worse than we already do. Another way is to simply stop inviting us. Even though we know we likely can’t attend, to not get an invite can be devastating. It can make us feel discarded and less like human beings.

It’s the thought that counts

I get there are some events that I’m probably going to always decline or cancel on. Sitting on the beach on a sunny 100-degree day is definitely one of them (my heat intolerance is so bad, I can safely say that’s pretty much the worst situation for my body, I’m honestly not sure I’d live through it). That doesn’t mean I don’t want to feel included though. While it took some time to understand, a lot of my friends seem to know this. Even acknowledging the issues I might have, “I know it’s really hot out” or “I know it might be a bit loud” and even giving an option for later “Hey, we’re hitting the beach, but if you want to come by the house later when it’s cooler…” Being at least given the option is important. Yes, I might feel a little bad declining, but it is much better than never being asked. I know my body has a few limits, but they’re so much easier to live with when you acknowledge them. You know I probably can’t come, but you know why, you wish I could, and you understand. If there is one thing we all wish we had, it’s more understanding. If you have a friend with MS, or another chronic illness, please don’t stop inviting them.

Thanks so much for reading and always feel free to share!

Devin

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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

  • SharonW27
    2 months ago

    Grandjoebell, I’m new to this site and entered my first post yesterday. I can’t see everything I entered and I can’t see yours. I’d like to read the rest of your story. How do get past “…”?

  • GRANDJOEBELL
    2 months ago

    I was invited at a party yesterday evening. The house had steps at the entrance and to the garden. I said i felt like having a pee. A few guys pulled me in my wheelchair and i was shown the lavatories. Small and impossible to transfer to. I tried the catheter system without leaving my chair. When I left i noticed I missed the hole. There was plenty of urine on the ground. My wife and a maid helped me clean it. I started the party completely ashamed and swore not to drink a sip. Actually nobody saw what happened and met people.

  • Shelby Comito moderator
    2 months ago

    Hi @chong61, I’m so sorry you’re having trouble viewing the content on our site & appreciate you letting us know! All of our content is free to view and access, though you do need to make sure you are logged into your account in order to see community members’ comments located below the article. Here’s the link to our help center with more site how-tos: https://multiplesclerosis.net/help-center/ And always feel free to reach out to us at contact@multiplesclerosis.net if you continue to have trouble! – Shelby, MultipleSclerosis.net Team Member

  • chong61
    2 months ago

    My problem is, I read a post and later I want one of my children to read it or I wish to reread the post and it will just show the top portion of that post and I do not know how to bring the entire post back. Even happens on a post I make and then later I wish to reread and most of it is gone. How do I get the entire post back up?

  • Devin Garlit moderator author
    2 months ago

    Thank you for sharing @GRANDJOEBELL, I know it isn’t easy to talk about stuff like that, but I’m sure it’ll be helpful for others to see it, sadly, I’m sure many have been in similar situations as well.

  • SharonW27
    2 months ago

    After asking the question, I was able to see your entire posting. I’ll get the hang of this. 🙂 I admire you for not letting an embarrassing incident keep you from the rest of your time at the party. MS is what you deal with; it’s not who you are. I have to remind myself of that frequently to get on with life.

  • chong61
    2 months ago

    Please tell me how to see the full post. It is frustration when I read and then cannot see the full post. Even on replies I send, I am never able to see the entire post.

  • kefranklin
    2 months ago

    Very well said. I can tolerate only so much sensory input in such amazingly varied ways. It’s too sunny sometimes to even look out the window. The sun on my skin literally hurts sometimes, too. Even I feel like there’s something wrong with my mind at times. I can’t even trust the input and have to consider if any of my issues are filtering data entry, so to speak.

  • Devin Garlit moderator author
    2 months ago

    Thank you @kefranklin, I completely understand your sensory issues and not trusting yourself. When I’m having a bad day, I know my decisions can’t be trusted, that’s a pretty scary time.

  • SharonW27
    2 months ago

    kefranklin, While I’m not happy to hear that sunlight on your skin hurts, I’m relieved to hear that I’m not the only one. I was diagnosed with MS 16 years ago, but it’s only been the last couple of summers when I absolutely cannot tolerate direct sunlight, even through a car window. Thank you for sharing that.

  • Blp56
    2 months ago

    Hi Devin
    You totally got it correct! I never was able to express how I feel with being invited then the day arrives and I’m unable to because of fatigue or not feeling well etc.
    And nobody understands why you miss so many events. Not friends relatives or even your immediate family. You always want to go to these invites TOO.
    Thank YOU for putting it in words for everyone who dosen’t have an illness and for us who HAVE a chronic disease like MS and can’t always get OUR point and words across in how we feel about invites. Becky

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Blp56, I’m glad I was able to properly express it!

  • Clarissa
    2 months ago

    Thanks for this, Devin. I confess this is one of the aspects of MS that has caused me the most sorrow, of a deep-seated, soul-killing kind. I am by nature a very social person, and not being able to join everyone else in social gatherings because of the venue or activities has been a perpetual source of heartache. My MS has progressed to the point that it is not simply anymore a matter of “sucking it up” and braving hot temperatures and then paying for it the following days/weeks. If I try to do that now, having had MS for 20 years, I will end up making a spectacle of myself, losing control of my bodily functions right then and there or collapsing in a heap. So I stay home, wiser but wounded in the heart. It is so frustrating and depressing not to have the physical tolerances that so many other people take for granted. And people who do not have a chronic illness just do not understand, not really, that we do not choose to be this way. This is not a life we have chosen. We did not ask for this disease, but we are forced to accommodate our lives to it.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @clarissa, I too am a very social person and not being able to attend any social activities because of my body really does a number, which is made even worse when they don’t understand. I hope all of my family and friends will read this.

  • potter
    2 months ago

    Hot and humid today and my heat intolerance is at a low level. My husband and I went grocery shopping for my 96 year old mother in-law. She wants us to visit for awhile, she also keeps her house at 83 degrees and she is still cold. After 15 minutes I ask if I can turn it down a few degrees. She says no, I try finding a breeze outside no luck. Once again I am the bad guy telling my husband I need to go. Potter

  • Devin Garlit moderator author
    2 months ago

    Thank you @potter, oh wow, 83 degrees, I don’t think I’d last even 15 minutes. I hope you husband can read some of this site to understand just how awful and even dangerous that can be.

  • chong61
    2 months ago

    Spot on Devin. Just this past week my youngest daughter and her man told me they were coming to get me and take me out to eat. I told her it was just too difficult to go. After a bit of how they think I don’t want to still live outside my house, yes, you got it, I said ok, I will go.

    It was a bit of an ordeal to get in the car, but the real deal came getting me out of the car and my legs refusing to stand. Long story short, yes I ate and yes I thanked them, but I so wished they had just got something and came to my house to eat. I had to ask for a booth, a chair I would fall out of. I might manage to fall out of a booth soon.

    I am blessed with three children, the oldest girl understands and when she comes she brings food to eat in my home. My son just stays quite and will take me to the doc and never say a word. I don’t know what is the worst.

    As to friends events, I have none. All my friends except one have died. This one knows how much I love doughnuts and she will get some and come to my house. I love her.

  • Devin Garlit moderator author
    2 months ago

    Thank you @chong61! I think your story also hits another good topic, the necessity to plan. Having some more warning and beeing able to plan ahead can make a huge difference when it comes to leaving the house.

  • Yoshitail9
    2 months ago

    Right on AGAIN Devin. Especially for the invites to the backyard barbecues with many guests. I’m sure I can find some shade in the yard but what do I do if I have to pee ! Especially when it’s a larger crowd and my legs aren’t carrying me that well and I have to ask the homeowner to use the bathroom. And what if somebody is already using it. For all these fears I usually do not attend and miss seeing acquaintances some of which this is the only time in the year that I would see them.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Yoshitail9, I definitely understand! This time of year can be especially troublesome!

  • zeus73
    2 months ago

    What happens to me when I’m asked to do anything (most of which I do turn down) is that I feel sad and powerless because I continue this movement further and further away from who I want to be. I don’t know quite how to think about the isolation that is a natural consequence.

    You’re right, Devin, invitations have grown fewer and further between. I wonder if it’s for self protection that I’ve shut down my enthusiasm for much of what I used to enjoy because I’m so exhausted after simply thinking about what might be necessary for me to do in order to participate in most things. I will usually choose the lesser path…the one that requires less of me physically, no conversations about my limitations that I assume are heard as excuses, no defensiveness about what others have said is my withdrawal. I do stay home but am always busy with numerous creative projects and with my little dog’s companionship. My mind is crowded with ideas about the next project and the next. I wonder if this is a technique I’ve devised for squeezing out unavoidable disappointments presented by MS. I tell myself it’s okay to feel sad about some things and that what’s most important is to push forward, choose from a list (however short it may be) of possibilities for what I will do instead of giving in. That, in itself, can be exhausting, you know?

  • Devin Garlit moderator author
    2 months ago

    Thank you @zeus73, I do understand, there are certainly times, when you’ve had to say no so many times, that it being invited can start to feel painful. There are times when I too almost don’t want to even know about what people are doing because I can’t participate. I too tend to fold inside and focus on my dog and whatever I’m working on at home, I think that’s just natural. I do believe it’s important to be social though, and when invitations begin to dry up, it’s important to start extending a few of your own to people, even if it’s to simply stop by for coffee or whatever.

  • Shelby Comito moderator
    2 months ago

    Hi @zeus73, thank you so much for taking the time to share your thoughts. I think you go straight to the heart of the social dilemma many with MS face – balancing the desire to particpate and be social with the reality of MS symptoms and fatigue. It’s a double-edged sword, and I can definitely understand your motives toward self-protection and withdrawal. I think many here can relate to that, too. Thank you again for sharing. Online connections can come a little bit easier sometimes, and please know this community is here for you anytime you need. – Shelby, MultipleSclerosis.net Team Member

  • messeeone
    2 months ago

    Zeus73, I struggled with this for many years and I’ve just recently realized my friends and family finally “get” it. It happened when they stopped trying to cajole me in to attending, which was admittedly a little sad, but at the same time they seemed to understand my dilemma and continued to invite me. How did that happen? I think repeated sharing of information like Devin’s article. My own explanations work, too, but somehow sharing articles from MS.net have really gotten through to people. It’s as if we tell our loved ones and friends our troubles, but when they read it in MS.net, it’s validated? Whatever, I’m grateful for articles like this and I think they’ve really made a difference!

  • Janus
    2 months ago

    This is an excellent view on this topic Devin. Thank you so much for writing it. I have been thinking about this very subject, reminding myself that even if I’m not invited, who might be in a similar situation socially isolated, that I could invite over where it’s comfortable, to visit with?

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Janus!

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