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Declaration of Dependence

As the sands of time trickle down the hourglass of my life with MS, I find myself in an extremely unpalatable situation. Now close to twenty years diagnosed (but likely having the disease much longer than that), my greatest difficulty is not the individual symptoms that I deal with on a daily basis, but rather, the net effect they conspire to create: an ever-increasing lack of independence. As of writing this, I’m approaching my 42nd birthday, and I’m left with the realization that, more and more, I have to rely on others so that I can exist.

This isn’t true for all of us

Multiple sclerosis is a disease that affects everyone differently. You’ve no doubt heard that before, but it bears repeating again. I am the product of many years fighting the disease, much of it with inadequate medication. With the scientific advances of recent years, those newly diagnosed will likely not be in my position. Still, there are many like me, whose bodies have been worn down by this illness. With that, we’ve had abilities stripped from us slowly over time.

What you don’t see

If you saw me out and about, you might think that there is nothing wrong with me. However, what you don’t see is that I didn’t get there on my own. I relied on someone else to transport me, as I’ve long since given up driving because of my illness. You probably don’t notice that I’m sitting or leaning against something because standing on my own can be difficult. I’m well-nourished, but you can’t tell that I needed someone else to buy groceries for me because not only is that process difficult due to my inability to drive, but because it’s also extremely fatiguing and cognitively difficult

Ensuring that I have the help I need

Yep, I may look perfectly fine on the outside, but I am forced to live with a roommate, not only because disability doesn’t pay enough for me to have a place of my own place, but because I simply can’t handle the upkeep. I can’t mow the lawn, cleaning up around the house is difficult, making my own meals can be challenging as well. I might be able to do any of the common household tasks once, but it would be enough to exhaust my body for days (everything is SO exhausting). Everything I do needs to be planned out, not only to maximize my abilities and minimize my downtime, but to ensure that I have the help I need to get through life.

Life is good*

For the most part, my life is pretty good. I put an asterisk on that though, because I eventually begin to consider how dependent I am on others. When I start thinking about my situation, it can be extremely depressing. I lived alone for much of my adult life, and I enjoyed it. I was extremely independent for such a long time, and when I look at my life now, it feels downright depressing. While my life is good, I know that it wouldn’t be if I didn’t have help. I either have to rely on friends or pay for the help I need (again, not easy when you are on disability). Relying on friends takes a toll; it leaves me feeling like a burden and unable to repay the favors. It doesn’t matter how happy they are to help, I still can’t escape how bad it makes me feel.

Living your best life

Despite some of the logistical and mental nightmares I have with this dependent life, I’m doing the best I can. While I feel like I am a burden and an inconvenience at times, I’m doing what I need to live. I know I can’t exactly repay everyone who helps me, but I try to earn it by being the best I can be: by being a good friend, being someone they can count on (even if it’s not physically), and by being a decent human being. It’s very hard for me to admit how dependent I am on others, particularly to myself.

I’m doing the best I can

I get by remembering that life doesn’t go according to plan, and when that plan gets thrown away, you have to either adapt or give up. I choose to adapt and do the best I can. Yes, I get frustrated at times – anyone in my situation would – but that’s OK, as long as I get back up and do the best I can. So yes, I’ve become extremely dependent on others. While that can get me down at times, it hasn’t stopped me from living and it shouldn’t stop you either.

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

  • jtscoop
    1 week ago

    thanks for writing such an emotional article. i am living in a similar situation. i used to b the one others relied on. now it is frustratingly the opposite. i wish you and all those like us much strength.

  • Devin Garlit moderator author
    7 days ago

    Thanks so much @jtscoop, I wish you the same! Hang in there!

  • forrestgump
    3 weeks ago

    Devin thank you so much for writing this article. Awesome read and for once I see someone else able to express some of what I go through but I’m affected far more at times.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much @forrestgump!

  • debrakay2
    3 weeks ago

    I love all of your articles. You put my thoughts into words. You give me comfort knowing I am not alone in my struggle.
    Thank you so much Devin.

    Sincerely, Debra

  • Devin Garlit moderator author
    3 weeks ago

    Thanks so much @debrakay2, you are definitely not alone, far from it!

  • DiPW1
    3 weeks ago

    Hi Devin,
    Thank you for your article. I too have become more dependent and I don’t like it. I had my first symptoms, blurred vision, in 1979, at 21. I had other symptoms over the years of numbness, fatigue and tingling, but wasn’t believed. I was told I was a bored housewife and needed to get out and do more. I finally found a doctor who believed me in 1992, had an MRI and lumbar puncture and was finally diagnosed at 35. I’m now 61. Apart from a limp, I appear fit and healthy. Weakness, fatigue, pain and depression often keep me from living my best life. I’m lucky to have a husband who helps me, but live with guilt, feeling I’ve ruined his life. Summer is on its way in Australia and, as usual, I’m dreading it. I put on a brave face when out, but days when I’m home alone, I struggle.
    Thank you for sharing your life with us.
    Dianne

  • Devin Garlit moderator author
    3 weeks ago

    Thank you @DiPW1, appreciate you commenting and sharing a little of your story. As I hope you can see, you certainly aren’t alone!

  • aaosnana
    3 weeks ago

    Your post is so totally spot on to how I feel! The individual symptoms aren’t nearly as bothersome by themselves as the resulting loss of independence. Thank you for expressing so well exactly how I feel.

  • Shelby Comito moderator
    3 weeks ago

    Thank you so much for sharing your thoughts. You are not alone @msjuneb and we’re grateful you found our community. We’re here for you!! – Shelby, MultipleSclerosis.net Team Member

  • KimmyK
    4 weeks ago

    Thank you for your candor, Devin. I too have lost a lot of independence, it’s really hard to deal with. I was very independent, working in medical sales & covering 1/2 of Fl. It was fun, busy, chaotic & exciting. Then, it all caught up with me. What started as “some time off work to decompress” has turned into full disability. I’m in constant pain, and most of the time just don’t feel well.
    Tysabri was my saving grace for many years, but despite it “doing it’s job” of keeping me flare up free, MS was still doing damage. Overnight I went from being JCV- to off the charts +. I researched the options of a new RX, & very seriously considered stopping DMD all together questioning if the reward was worth the risks of cancer, herpes etc. I settled on Ocrevus, I’m four months post infusion and feel worse now than before. My parents are aged & very ill, they’re in need of my help now too.
    More often than not I pray to die in my sleep- of course assuming I can sleep or, maybe Calgon could just take me away- but, I think I have to get in a tub for that. Hmmmm.
    As always, Devin thanks for your articles. XO

  • Devin Garlit moderator author
    3 weeks ago

    Thank you @KimmyK. I hope you weigh your options carefully, if Tysabri is working, you can still be JC+ and take it. The risks, while scary, really are small. When PML occured, it was when it was an unknown and not monitored for. These days they know enough to routinely monitor you. In some cases, patients begin getting Tysabri every six weeks instead of four. Definitely have a discussion with your doctor about it, but know that there are many people who are JC+ and stay on Tysabri.

  • Jaye
    4 weeks ago

    Thanks so much for your insight! I was diagnosed 20 yrs ago. I’ve only had minor numbness or the odd vertigo until last year. It happened so fast and different from my previous symptoms that I was convinced it wasn’t MS. I’ve spent most of the year trying to figure out what else it could be. In all the material and articles I’ve never associated myself with what they were describing. Everyone has a different way of talking about MS, but you are the first person that describes exactly what I feel! The way you describe everything is exactly on point. I’ve accepted the MS and have moved forward now, but I want to thank you for your writing. I don’t feel so alone in my journey. Please don’t ever stop, you make such a difference!

  • Devin Garlit moderator author
    3 weeks ago

    Thanks so much @Jaye, I very much appreciate that!

  • CTLH
    4 weeks ago

    Thank you Devin for another wonderful piece. I am 63, 2 years diagnosed after many years of wondering what the heck is going on. Your sharing your personal stories and feelings are a great help to me and others. I was a driver for the Community Car, a volunteer group, in my town in CT. We drove to medical appointments free of any charges. We gave a little bit of independence to our town wide neighbors. I often took the “long way” home for a bit of scenery and conversation. I wish every community offered this for their neighbors. I no longer drive but enjoyed every minute of it. Thank you again.

  • Devin Garlit moderator author
    4 weeks ago

    Thank you @CTLH! That sounds like such a wonderful program!

  • doublebreve
    4 weeks ago

    Hi Devin, This is hard! Hang in there & keep telling us whats on your mind. You help a lot of us to keep on dealing, keep on coping keep on enduring!! You checked all the boxes about guilt of burden, not driving, looking ‘too good’ Ok I was DX in 2001 but kept working until 2016. Dr said I worked way too long, anyway, b4 my former job I worked 4 Chanel & Lancôme, so I’ll never give my red lipstick or not hightlight my hair lol so I never look ill. Plus my mom taught me, since young, shoulders back head up & smile! that being said…the people who know me understand how hard it is 4 me 2 get out bed & of the house. It takes planning & A LOT of help. 4 the people who dont know me or judge me based on appearance, that is their problem, remember, shoulders back head up & smile, they dont matter! We didnt chose this but it doesnt define either. You are still you the Pre-MS Devin & Im still the same too. Our brains need more processing time but 2 our core we are the same. Im nearly 53 & have a rolling walkeryes I get lots of that. I’ll never drive again I dont wont anyones life lost because my vanity made me think I could do more than I really can or should! Disability isnt a big help. I worked all my life & get less than people wont work & get daycare paid 4 then they go home & watch tv I know this as former VP…Sorry 4 getting off topic. I pray that you find the support & love you need & deserve in tour life!

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much @doublebreve!

  • filmcriticwife
    4 weeks ago

    Hi Devin, I can appreciate your article too. I’m a full time (40 hrs a week) professional caregiver for my sister, who has had relapsing remitting since 1993 or before, and she is about to turn 60. Her loss of independence is very disheartening. Like everyone, we try to make the best of it. Even though she can’t repay what I physically do for her, she’s my best friend and we are incredibly lucky to get along very well. She always listens when I need to vent, and she always expresses her gratitude. She is not a burden, and neither are you. If your friends are good friends, they understand that you face challenges that they do not, and they are happy to help. My hope and prayer is that you are surrounded by ones who are compassionate and empathetic.

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much @filmcriticwife, it warms my heart to hear that.

  • Yoshitail9
    4 weeks ago

    Hey Devin
    Hang in there. The people who help you don’t consider it a burden. They do it because they love you, a sign of who you are. I’ve been at this for 40 years and am 72 years old, but still going. A lot slower and frustrating but still going. As someone on this site once put it, and I’m paraphrasing, Having MS is like being an Iceberg. What you see on the surface is not what lies below.
    Just like we look so good in appearance but not so good what’s going on inside from pain, bladder, bowel, weaknes, etc, etc,etc. Keep on writing for when you do you are helping all of us.

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much @Yoshitail9, very much appreciated!

  • namrodman
    4 weeks ago

    You wrote a brave article, but you live your life with more courage than anyone could imagine. I too have lost much of my independence, but mostly recently. Like DebbieCP, I was diagnosed in 2000, but realized my symptoms began many years prior.
    Since then I have been diagnosed with Celiacs, Hashimoto’s, and chronic migraines. Having meds for these reducing my calcium, Resulting in osteoporosis. As I have tripped from the MS, just in the last 17 years..I have broken dozens of bones!
    I would love to find a roommate who would understand my challenges. I find you very fortunate to at least have the support, transportation and help at home. How did you find your roommate?
    Stay well..nmr

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much @namrodman, in my case, my roommate is a longtime friend. It can be worthwhile to reach out to your local MS Society chapter though to see if they have thoughts on a roommate. Another helpful tactic can be to see if your local area has a township Facebook group for locals, I’ve often see roommate inquires in such groups in my own area.

  • D-bob
    4 weeks ago

    Imagine how it would affect your independence if you received all your medications by mail and the USPS, with no notice, stopped service to your whole neighborhood and don’t have the basic decency to explain why. OH….and they don’t consider being on hospice care, in a wheelchair and on continuous oxygen as well as having SPMS to be enough of a “hardship” to restart delivery and pick up service and their attitude is “We don’t have to and you can’t make us.”

  • Devin Garlit moderator author
    4 weeks ago

    Wow, @D-bob, that sounds awful! You should contact your local MS Society chapter and see if they can help advocate for you!

  • DebbieCP
    4 weeks ago

    Devin,
    I feel the same as you. Recently stopped driving, but hoping to drive again next spring. I agree, asking for help is not easy. I am also at 20 years diagnosed – but a little older.
    Hang in there, know that I am thinking of you as we deal with the same things.
    Debbie

  • Devin Garlit moderator author
    4 weeks ago

    Thank you @DebbieCP! You hang in there too!

  • Beatrijs
    4 weeks ago

    Having MS since the year 2000 I think to know what you’re talking about.
    Having ADHD too doesn’t help either.
    Luckily my husband helpes me very much but it is not easy for him either.
    Most party’s with family or friends end with me sitting alone there and I don like talking about my invisible disease.
    Sorry for my imperfect English since I’m Dutch living in Belgium
    Bea

  • Devin Garlit moderator author
    4 weeks ago

    Thank you @Beatrijs!

  • Kevinp787
    4 weeks ago

    Devin, this is one of the best well written articles I have read about your personal experiences with having multiple sclerosis. Thank you for sharing. Sometimes, knowing you’re not alone, makes a big difference.
    Thank you. Kevin

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much @Kevinp787, very much appreciated!

  • Thomas Bellas
    4 weeks ago

    Well said. ❤️

  • bayard42
    1 month ago

    I just like to read comments on MS.

    Still the cure search becomes real if it actually happens. Until this happens I think more money should be spent on people who wish to improve people’s level of living with incurable disease to a higher level.

  • DonnaFA moderator
    1 month ago

    Hi @bayard42,

    I agree that a….well “standard” standard of living should be a priority for all people. Thanks for sharing your thoughts and for being here. -Warmly, Donna (MultipleSclerosis.net team)

  • Legsonstrike
    1 month ago

    I totally agree with everything you wrote! I didn’t drive for about two years and just recently started back driving because I’m tired of asking! If I don’t have a ride,i dont have a life!! I know we are blessed to still be able to do the things we can but you explained it all too well!! I’ve been diagnosed since 2012,i was 43 at the time,I’m52this month. I,too,choose to adapt and not give up!! Keep your head up Devin,you know your not alone and so many people love you!! It’s hard every day but we’ve got this!!!

  • NJB3
    1 month ago

    Adaptation is critical and I applaud you. Being a good friend is not dependent on doing something. If you ‘listen’ you are a very good friend.

  • Lily
    1 month ago

    Thank you for sharing your thoughts! You validate what I am going thru!
    Others may think I have an easy life, just chillin’ each day, but they don’t know what’s inside.
    It’s impossible to understand this by those that don’t have MS, but you explain it so clearly, so true. I appreciate your positivity! <3

  • SharonW27
    1 month ago

    Thank you for sharing this point of view. I was diagnosed about 17 yrs ago. I’m 54 and work full-time, but lately, I’m wondering how much longer I can continue at this pace. As I write this, I’m lying on my couch waiting for the pain to disappear. Just like you, I appear fine to people I work with but I’m far from it at the moment. You’re article gave me some things to think about such as “who can I rely on for day to day tasks?” and “how can I manage my energy level better?” As for you, I don’t believe that the people who care about you feel the least bit put out by helping you anymore than you feel put out by listening to a friend vent or tell a story. It’s just a way of loving. And the recipient of love is never a burden, right? (I’ll have to reread this to myself when I’m having a down day. 🙂 )

  • Mo50
    1 month ago

    Oh Devin I hear you and I feel your anguish. I turned 50 this year and have had MS for 24 years. On top of that I have Bipolar mood disorder. I live alone as I am impossible to live with in a cottage that my father paid for he also pays for my medical aid and a maid on two days a week. So I struggle with a lot of dependency issues but know that without him and my sister I would be lost. Dad pops in daily for a cappuccino or in winter he makes me some soup and I know that I will miss him terribly when he passes. I feel lucky to havr my circle of people who I can depend on and I feel blessed by your writing which I am reading by candlelight tonight as there is a power failure tonight here. Devin keep on keeping on you are a very powerful young writer

  • filmcriticwife
    4 weeks ago

    I also have bipolar 2 disorder, and I just have to say, as a caregiver for my sister with relapsing remitting, I had to get serious with my meds and therapy to do this kind of work full time. My sister isn’t a burden or difficult…it was me who was the difficult one. I encourage anyone who is bipolar to stay as compliant as you can on meds and with therapy. I wish you all good vibes and luck and positive, happy days.

  • Shelby Comito moderator
    4 weeks ago

    We’re so grateful to have your voice and perspective here, @filmcriticwife. Thank you so much for sharing and whether you need information, support, or just a listening ear, we’re here for you and your sister whenever you need. – Shelby, MultipleSclerosis.net Team Member

  • Shelby Comito moderator
    1 month ago

    Thank you so much for reaching out here and sharing a bit about what you’re going through @mo50. It sounds like your father loves and cherishes you so much – I love that he pops by for a cappuccino or some soup! I’m so glad you have his support and attentiveness.

    I know an online community can only be there for you in so many ways, but please know there’s always someone here to listen and who understands. We welcome you to reach out anytime you need.

    – Shelby, MultipleSclerosis.net Team Member

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