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For Friends & Family: Your Friend’s Aunt’s Cousin’s Gardener’s MS

So you find out one of your friends, family members, coworkers, or acquaintances has been diagnosed with Multiple Sclerosis. It’s not a common disease, so your mind immediately searches for what you know about it and comes across a great factoid to share! Yep, you know someone else who has the illness! Your best friend’s aunt’s cousin’s gardener has it! Not only do they have the disease, but they’re also doing really well with it, too! I get it, it’s your way of trying to connect to us, it’s natural. As instinctive as it is to mention this connection, I want to clue you into a few things before you bring it up.

MS and invisible symptoms

While they may be doing well, it’s important to mention that they might not be doing as well as you think. Chances are, you probably don’t know them all that well. Maybe you’ve actually met them, even talked to them, and they appear to be doing fine. They might have even told you they are doing well. The thing is, that’s not always the case. Multiple Sclerosis can vary a ton from person to person, but one hallmark of the disease is a variety of symptoms that we consider “invisible”, meaning they aren’t very perceptible when you look at us. Fatigue, pain, brain fog, spasms, and many other symptoms can all be occurring while we are talking to you. Even when we are putting on a big smile. This invisible nature of our issues, coupled with the fact that we simply want to be considered like everyone else leads us to put up a brave front and act like nothing is wrong. So no matter what you’ve heard or witnessed about this person you know, even if it’s what they’ve told you, it may not be the full truth of the matter. People with MS tend to have a record of pulling it together for a bit, only to pay for it later, often when they are alone.

MS is different from person to person

Again, I get it, it’s the natural thought process, you meet me, learn of my illness, and your brain makes a connection. This is such a natural flow of thought, many of us hear it all the time, from almost everyone we meet. Here’s the thing: I’ve been at this disease a long time; I know that person may not be as well as they seem or that they simply have a different course of the disease than me. When I was starting out though (and even now if I’m having a bad day), it’s the very last thing I want to hear. If they are really doing great, awesome, I’m happy for them, but they are not me. The same is true if they are really struggling. They may have it worse than me, too; I may not have the same limitations as them. The point is, this isn’t a one-size-fits-all disease. I cannot stress enough how different it can be from person to person.

We are more than our MS

While it may not be your intention, mentioning someone else’s MS can be upsetting to some, particularly if that person is better or worse than we are. It also generalizes us and characterizes us by our disease. Even without meaning it, in an instant, it feels like you’ve made my disease the sum of my existence. It’s not super far from saying “oh, you are a person of this color, I know another person of that color, too, and they are like this”. That’s a very extreme way of looking at it, but just an example that these kinds of generalizations happen everywhere. In addition to generalizations, it invites comparisons. If the person you know is doing better or worse than me, I’m then left feeling a little defensive of myself. It feels like you are comparing and judging me based on this other person you know. I’m left wondering what you think of me, if I’m not doing as well as the person you know.

Time and a place

So much of life comes down to timing, and this is no different. Chances are, I’d love to talk to you about my illness and explain it more. I’d even love to talk about (and maybe get in touch with) your best friend’s aunt’s cousin’s gardener. However, let that discussion come about organically. Please don’t make it one of the first things you tell me. That’s the very situation most of us run into and have issues with. When you meet me, sure, acknowledge my illness if it somehow comes up, but please don’t make a comparison. That said, I’m more comfortable than most with discussing my disease. There are many that want to avoid the topic like the plague. As I said earlier, most of us are just trying to look normal for a bit. Let’s absolutely have that conversation, but at a later date, when we know each other more.

Just something to think about.

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

  • itasara
    4 months ago

    It is so true that everyone’s MS is different. One of my daughters was dx’d three years before I knew I also had MS. Both of us are doing quite well. She came off meds three years ago and I came off meds this year. It isn’t necessarily the case that MS will get worse with age. I have read that it usually doesn’t and why I came off medication. My daughter’s doc says she is doing so well she did not need to stay on it either, although she is in her 30’s and am not sure of that decision. I am 71 now and can’t say after 4 months off meds that I feel any different. I guess the next MRI in Oct. may or may not show anything new. Most people do not know a lot about MS so I am happy to explain if they are interested. I trained years ago as a nurse and I didn’t know as about it then as much as I do today. I was scared and worried 12 years ago what would happen to me. My husband thought we should move into a ranch incase I couldn’t handle stairs. We never moved (yet) and I still walk fine on my own.

  • Csprad
    4 months ago

    I was diagnosed in March of this (2019) year. I’m new to all of this. One of the things the drives me up the wall about encountering, even people I know, is the seemingly endless questions about how I am doing and if I’m ok today. I know they mean well, but it’s been five months since the diagnosis and ten months since the start of this mess. I may have a little worse gait sometimes depending on how fired up my hips are and how heavy my legs and feet are. The ones close to me all know that it has no cure; this is the new me. I just want to be like everyone else. I know that I have to live like this, I do it every day. I hate having it shoved back in my face when all I want is to be like everyone else and try not to think about it for while.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Csprad, so many of us know exactly how you feel, it’s extremely frustrating!

  • saddison
    4 months ago

    I can so relate to this post. If I an encountered by someone I know out in a public place other than a medical facility, here are some fun facts, that you can’t see/know. First, it is a rarity for me to be able to be out for anything other than a medical appointment. Getting showered requires the assistance of my husband/caregiver, and getting dressed to go out, fixing my hair, etc. is completely exhausting. Bowel and bladder issues mean that I cannot eat and must restrict my fluid intake, even if it means all day, I am in a manual wheelchair being pushed by my husband, since my last relapse left me permanently unable to walk. I don’t have the strength to propel myself. Transferring out of the house, into the car, and stowing the wheelchair multiple times is exhausting for me and my husband. Fatigue brings on the return of my double vision. I have hearing loss and wear bilateral hearing aides. I have experienced fluctuating hearing loss, during relapses. I have tinnitus and certain environments are intolerable. Loud sounds (a group laughing, chairs moving, etc.) can set off a full body tremor. My voice is weak, and it’s volume is very low. If you have encountered me in a mall for example, you will not be able to hear me speak. Neither can my husband when he is behind and pushing me in my wheelchair. I have learned to raise one hand if I need or want him to stop, so he can come to my front, lean down and hear me. Like many, I may suffer from spasms, numbness, and pain during this whole process of preparing for and going out for “fun.” You may not realize that I am going about this process on little or no sleep, due to chronic, severe, and persistent insomnia. You also will not see the pain from where I am fighting pressure sores, nor the pain in my elbows from resting my arms on the arms of my wheelchair. Heaven forbid that I have a seizure while out. If it is too cold or too hot, I am in trouble. Heat exacerbates my symptoms, giving me profound weakness, and cold gives me asthma. Perhaps I have just come from my neurologist’s office where I have received more than thirty injections of Dysport in my legs for spasticity or from an all day infusion, via my port, for my Primary Immune Deficiency (CVID), or a shorter infusion of my MS med or for Osteoarthritis. How do you think that makes you feel when your cognitive issues leave you unable to follow the plot of a television program, despite your Master’s degree. I haven’t even mentioned the years of PT, OT, Speech/Cognitive therapy or the times I have been in inpatient physical rehab. Nor have I mentioned the trials in finding out which aides for daily living and assistive devices will work for you. I’ll stop there. I know this sounds like an angry rant. It is, in part, but honestly, I am extremely fortunate to have my husband of 48 years who takes care of my every need, and still, miraculously sees me as the woman he married. Those who don’t have a loved one with MS have no idea what it takes to live this life, and despite all of this, I am still grateful for the life I have.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @saddison

  • oSandi
    4 months ago

    Since beginning a DMT in 2000, I still have invisible symptoms (brain fog, bladder, bowel, diminished sight in one eye) that redefine how I do things. I hear the ‘you look great’ comment all the time and I just deal, but I truly resent it when someone tries to tell me ‘how’ I should do something – even if they are unaware that I have MS.

  • Devin Garlit moderator author
    4 months ago

    Thank you @oSandi, I think many here share that feeling of resentment that you experience!

  • Bkboo
    4 months ago

    Amen! I have heard “my so and so has MS and you look good because they are wheelchair bound, so do what u can now because that’s what will happen” OR you look great, you lucky, etc…so tired of hearing ALL the mis-informed comments about MS.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Bkboo, I feel like all of us are constantly fighting the misinformation out there. I don’t know about you, but I’d usually prefer they know nothing of the diseases, as opposed to thinking what they know is correct!

  • Bkboo
    4 months ago

    absolutely!! ugh Ive had people tell me when I get older it will get worse blah blah blah….like its not scary enough for me…thank you!

  • JennieM
    4 months ago

    As always, Devin, you’re spot on! Thanks for sharing this new gem.

    Heck, even some of those supposedly close to us still don’t get it – like my mother-in law (who’s mostly NOT the evil fairytale stereotype). I’ve been with her son for 29 years, and its now 22 since I started getting diagnosable MS symptoms. MS isn’t a new chapter of our story.

    That said, though, it seems that the fact that I was “doing so well/looked so good” for so long may have messed with her ability to comprehend that MS is not a static thing. The fact that the disease and its course are different for EVERYONE seems to befuddle mom-in law a lot (same goes for all the “invisible” symps, but that’s another story). Yep, I still get the “well, _______ was just diagnosed, and he’s finding ________ therapy really works for him.”

    My already fogged, fatigued brain realizes she’s trying to “connect” and be “helpful” in her way. But if being helpful is what’s really wanted with her comment/s, I wish she’d try to know me enough to pick a face to face time when we both have the energy and ability to TRULY connect and genuinely talk about how MS is for me…not about some semi-random guy who’s the friend of so and so.

    Sorry for venting. That said, thanks for opening the brilliant dialogue that allowed me to do so, Devin. 😉

  • Devin Garlit moderator author
    4 months ago

    Thank you @JennieM! I very much agree with you and always feel free to vent here!

  • m.Todd
    4 months ago

    Some people have this innate need to relay MS information about someone they know/knew with it and their success/disaster with it.

    Yes, MS is doing me down 🙁

  • Devin Garlit moderator author
    4 months ago

    Thank you @m.Todd, they sure do! They almost seem excited by it too!

  • Yoshitail9
    4 months ago

    Devin
    After reading the caption to your article, I chuckled to myself and felt I didn’t have to read any further. But I did and without surprise you are dead-on once again.

  • Meagan Heidelberg moderator
    4 months ago

    Thank you so much for reading, @yoshitail9! Devin’s articles really do ring so true for so many of our community members!
    Best – Meagan, MultipleSclerosis.net Team Member

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @Yoshitail9!

  • Toddlius
    4 months ago

    OMG! I remember this happening not long after I was diagnosed. I just blew it off because it was an internet friend that I had known for a while. I wish I would’ve thought to say this. Thank you.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Toddlius, I think it probably happens to all of us at least once!

  • potter
    4 months ago

    My mother in-law who is 96 tells me she doesn’t think my MS will every cause any problems. She has a second cousins that has had it for years and he doesn’t have any problems. I asked her if she had ever visited him, she said maybe once. She talks to him on the phone a couple times a year. I asked her if he was still alive, she didn’t know. Even though she is 96 she isn’t considered addled at all. She is just like everyone else, not knowing her cousin that well and not wanting to know the real story of his MS. Potter

  • Devin Garlit moderator author
    4 months ago

    Thank you @potter, there are SO many people just like your mother-in-law, thinking they know, but really having no idea!

  • Janus Galante moderator
    4 months ago

    It’s funny where our minds go…the first thing I thought was….if it’s my best friend’s aunt’s cousin’s gardener that has m.s. then that gardener is my hero! Having a job working outdoors in the sun, rain, humidity etc. AND having the manual dexterity to pull, clip, sculpt…wow!
    Are they SURE it’s m.s.?
    (Sorry, just thinking of my own symptoms, and how this is not that far fetched.) The “I know someone who knows someone” is too familiar.
    Thanks once again Devin!

  • Meagan Heidelberg moderator
    4 months ago

    Hi Janus! That is typically where my mind goes, too! Too funny! Thank you so much for reading as well as commenting. We hope you are doing well.
    Meagan, MultipleSclerosis.net Team Member

  • maryh
    4 months ago

    I love reading your articles Devin. We’ve probably all had this experience. i wish yoga and diet, CBD and other holistic methods would cure MS but we know it isn’t true. I never expect anyone, family, friends or acquaintances, to understand MS. It’s too complicated to explain and to be understood. Advocating for MS education of the general public is very difficult for an MS sufferer. However I take the opportunity to educate when someone tells me how sick they are from either a cold, flu or other general illness that leaves them weak and fatigued or in pain. Try living this way every day for the rest of your life. Response is usually -wide open eyes to MS suffering.

  • Devin Garlit moderator author
    4 months ago

    Thank you @maryh!!

  • SueK
    4 months ago

    After twenty years diagnosed and another twenty prior to that undiagnosed, I have come across all sorts of reactions to learning I have MS. For me, most have been empathetic, asking questions and learning without judgement of need to compare. But that’s the type of people I gravitate to – intellectually curious. When one does come off overly anxious to offer their sentiments, I guide the conversation and raise awareness rather than giving into knee jerk reactions and confrontation. People mean well, but not all are experts when it comes to communication skills let alone – MS.

    That being said, I do have a daughter that went through a period of comparing notes with her doula, who also has MS. This woman is wholistic, a runner, active, non medicated, and symptom free. On the other hand, I am Secondary Progressive and on Lemtrada. I understand I daughter is both fearful and lovingly hopeful concerning my illness. When she began trying to suggest that I follow a similar self care life, I had to step up my game to calm and interject a dose of reality. “Yes”, I explained, “there are those with benign MS that have one attack and go on to a relapse free life. There are also those in early stages that are blissfully ignorant of what is going on beneath the surface and the monster that may (or may not) unexpectedly rear it’s ugly head. No two cases are alike. This has nothing to do with attitude nor the “magic” of kale and supplements. Our particular case, history and circumstance controls the ride.”

    When I hear about those doing so well, I am genuinely happy for them, hoping their journey continues to be pain and symptom free. This is tempered by stories of grave disability or death from accompanying conditions. This disease is comprised of a wide spectrum of presentations and we can learn something from each. So if your neighbor’s sister-in-law’s, housekeeper’s, second cousin, friend from high school has MS as well, know you have a lot of comrades out there. Politely listen to those open to eager to discuss uncommon, under represented disease, and offer your gems of wisdom to raise awareness. And try not to look for trouble or conflict where there is none. But that’s just me.

  • Shelby Comito moderator
    4 months ago

    Thanks so much for sharing your perspective and experiences @suek. I can imagine it’s much easier to shrug off well-meaning comments from strangers, but that it’s much more trying when it’s coming from your own family members and inner circle. It sounds like you handled this experience with your daughter so graciously, and I thank you for sharing about it with others here. It’s so helpful to shed light on our own personal circumstances and share with each other in order to help support, encourage, and better equip one another.
    – Shelby, MultipleSclerosis.net Team Member

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @SueK, appreciate you commenting, particularly about the situation with your daughter. I have no doubt many people have had the exact same experience. I’m sure it’s even tougher when it’s your child. I have a feeling others will read that and feel better knowing they’re not the only ones.

  • Kim Dolce moderator
    4 months ago

    Flawlessly stated, Devin, and the generalization analogy of race is right on the money, and infers extending the analogy to gender, creed and religion. –Kim, moderator

  • Devin Garlit moderator author
    4 months ago

    Thanks so much Kim!

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