Dealing with Literal Loneliness

Being diagnosed with MS at any age is never fun, but when you’re a young person diagnosed with MS, it seems to change more in your mind than just myelin!
 
I was diagnosed at just 22 years old. When I came out of the hospital after my diagnosis, I had to confront what seemed like a new life.

My hands were suddenly unusable thanks to the MS attack that led to my diagnosis. This meant my illustration business I’d been working hard to set up during university was now closed before it even had a chance. My clients pulled out after hearing about my diagnosis, and they weren’t the only ones. The gift shops wanting to stock my products pulled out, the agent I had found pulled out, and the book contracts I had fell through because they were all worried I couldn’t keep up with deadlines.

Worse than this, the friends I thought I was close to suddenly disappeared, too.

They didn’t want to know me.

They stopped answering my texts and my social media messages. When I bumped into them on the street, they gave me blank expressions. All I could think was, "What have I done?” It pushed me further into my depression.

I literally felt like I was left with nothing.

I remember thinking, “Well, if I can’t draw… who am I? If I don’t have friends, who can help me?”

Maybe you’re feeling the same?

All I kept saying to myself was, “Why me? Why had I been diagnosed with this... THING?”

There were so many “bad” people in this world, why did I get chosen to have this? I got angry. At myself and at the people around me.

I just didn’t understand why the people I’d been closest to at university and the people I’d been living in apartments with just acted like I suddenly didn’t exist?

I mean, I hadn’t changed as a person, I wasn’t now an alien… or a robot… or contagious?

I hated them for not reaching out.

Looking back now, I probably didn’t help repair our relationship either; there were things I could have done to help them to understand.

I have an inkling now as to why they went silent. It took me a while to come to this conclusion, but as I did, I realized that things weren’t as bleak as I first thought.

I realized that with these “friends,” I’d spent our whole friendship not being true to who I was, but instead, was a restricted, shut off version of myself that molded into their circle.
 
I realized they had never supported me, and now when I needed them the most, they were gone—MS taught me who my true friends were, and it was certainly not these people. Maybe you’ve found or still finding this, too?
 
I consciously made the decision to not be angry with them but instead, I thanked them for abandoning me in my time of need. Crazy right?
 
The thing is… from this experience, I grew into the person that I am today.

A stronger, more independent, confident person who is now not afraid to put her opinion across and now has the best friends she could ever ask for.

MS came as a scare at first, but in time, it became something I used to propel me to be better. Something I now feel has given me a new purpose in life and now my purpose in life is simple: to help people.

To educate “non-MS” people about MS and help empower the people that have it—particularly young people (as if growing up wasn’t hard enough, right?!)
  
You can’t get rid of this inconvenient MS thing—so it’s time to just embrace it, baby!
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Jessie

Jessie Ace

Being diagnosed at 22 at the start of her career was hard, but Jess found it in herself to turn things around and use MS as a tool to give people new help and inspiration. She has now made it her life’s mission to raise awareness and change public perception of invisible illnesses through design, blogging and public speaking. She strongly believes in empowering young people with MS helping them to achieve their dreams. Join her tribe of enabled warriors on Facebook and stop by her shop on Etsy.

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    15 Comments

  • Cecilia   Apr 25, 2018 3:07 PM
    I appreciated reading your "loneliness" post! I was diagnosed at 21, and felt abandoned, angry, hopeless... It's a long journey, and even now, 27 years later, I sometimes struggle. Your focus on reaching out to the newly diagnosed is admirable. As I make my way through secondary-progressive, post-chemo life choices, I also see the need for that group to be supported...
  • mickey morgan   Apr 26, 2018 11:13 AM
    Thanks, Jessie . . . tough girl!
    I've been Systemically poisoned by Cobalt from 2 of 4 hip surgeries. A pseudotumor had been circulating cobalt shards everywhere over all organs (it is like arsenic) for 4 years. I have an abnormal spinal tap and an abnormal MRI with 5 lesions . . . but docs smile and say it is all psychological (vertigo, urinary incontinence, cognitive loss, strokes, falls on sidewalks and down stairs, etc. etc.), but I can get no help to this advancing ailment (Chronic Fatigue Syndrome); my right arm wakes me at night at 11 level pain. My fingers tremored so much, I could barely type much less write . . . and I'm a writer. I now have 2 more RECALLED implements in me, my cobalt level has gone up slightly, and the doctor ran from the room when I told him about Systemic Poisoning by Cobalt (see YouTube: Dr. Steve Tower explains it all . . . it is amazingly like MS). But without a diagnosis, I can get no help. I've been black-listed, it seems, in Cincinnati. I sure would like to live my shortened life in peace (I'm 65, was a professional dancer).
    blessings to you, and may you be inspired with the spring,
    ms. mickey morgan
    Cincinnati 45220
  • Avatar
    jessieace  Apr 27, 2018 5:50 AM
    Thank you, Cecilia and Mickey, for sharing your stories, I really appreciate hearing them and feel very inspired by you both. You are incredibly strong people and I wish you every ounce of good health for the future. :)

    Please feel free to join the fight on Facebook search for 'Invisible Illness Warriors'

    Jessie Ace xxx
  • Josh   May 14, 2018 1:15 PM
    great story, i was diagnosed myself in 2015. it was scary, but i finally knew what was going on with me. i'm now 45, it has not been so bad. i havent had too many flare ups as a call them, but the tysabri seems to be doing it's work and i've been on it for almost 3 years. Thus far, i still have my career and everything, but i know that can change in a second so i'm enjoying the moments i do have...
  • gina machado   May 14, 2018 3:45 PM
    hello jessie i am 58 and i only know i have MS.about 4 when i was54 i am from portugal but i was born in south africa and know i am at a home care .
  • Rachel Renaud   May 14, 2018 4:14 PM
    I and all the people diagnosed with MS feel the same way "loneliness" has you Jessie. Our friends, family need to understand what is MS. Our hearts and emotions did not change only our body functions. Thank you for sharing
  • Ammar   May 14, 2018 9:48 PM
    This article is well written and very impactful. I felt your words coming out of my mouth. I’ve had MS for almost 1/2 my life. Loss of friendship and being alone (to me for my MS) has had the most impact of all my symptoms. I’m so happy that you were able to overcome and see how MS drove to be a better/stronger you.
  • Kate M.   May 16, 2018 10:39 AM
    I read this and just started sobbing. My poor husband has no clue what to do. This. 100% this. This is me. I was diagnosed at 22, 3 days after my wedding. I've been symptomatic since 15 or 16. I'm going to be 28 this year. I got pushed out of college for needing 3 consecutive semesters off to regroup my health, they took my scholarship and did some other messed up stuff. I'm on my 4th medicine. I haven't had feeling in my hands and feet for over 2 years. It's like I can't stop this beast. My relationships with my family suffered greatly -- they turned my diagnosis into a pity party. Friends are gone. The worst are the adults, the adults that have literally called me a liability to my face and told me it's why I'm not invited back to volunteer at the places that I spent 10 years prior working with. I am lucky though. I have a great husband. I finally got back into school. I'm working to take my life back over while educating people that I'm not contagious and I'm not going to fall over dead tomorrow. Thank you for sharing your story <3 You put my life into the words I couldn't find.
  • Michelle   Jun 6, 2018 10:21 AM
    Thank you Jessie for this much needed post! Being dxd at a young age is always challenging to say the least. I myself was dxd at 24, this year I will be 50. Your blog is exactly what has happened over the years, I remember a "friend" not allowing me to hold her baby, because not only did she think I would drop her, but because she thought I could give her baby MS. Moving forward my MSsister, just keep being yourself & not blame yourself ever! You will make new friends whom will except you for you. When you don't have any family/friends support it just makes you stronger, I should know, this year is my 26th year with MS & I live thru the loneliness as well. My advise is chose your circle wisely & never put anyone before your health! Stay positive and live LIFE! Be well.
  • Simon Lee   Jun 6, 2018 10:34 AM
    Hi,

    Thank you for sharing your experience. I went through divorce on my own at the same time as my ms diagnosis. I overcame eleven years on anti depressants. I am thriving now with a revived career helping people over the world. My faith in Jesus saw me through.
  • Tanner Wilson   Jun 6, 2018 11:29 AM
    ❤️❤️❤️
  • Kacey   Jun 6, 2018 5:43 PM
    Thank you for sharing this.
    I was diagnosed right out of High School. So it was such a hard transition from being this young health teenager who did it all to being this person who only had half her body function and having to rely on everyone else. You really do learn who your friends are during the hard times.
    Now I’m 26 my life decision revolve around the MS. It gets hard watching everyone go out while you stay home because the fatigue gets out of control. My husband has been the person I need. He’s been okay with not going out and waiting to have a kid.
    it’s unfortunate that every decision we make we have to base it around the MS. But ignoring it will only makes it worse.

    I wish you the best
    Kacey
  • Lindsy B   Jun 11, 2018 12:40 PM
    Thank you for sharing. I was diagnosed at 21 during my senior year of college. A tumultuous time in life even without a diagnosis like this. Over the last 14 years, I’ve realized that my diagnosis - my MS - has given me much more than it’s taken:
    - an understanding of my limits
    - clarity of who I am and what matters most
    - appreciation of what I have
    - a positive “chip on my shoulder” that pushes me each day to do more than what anyone expects of me

    ✌🏼 & ❤️ to you and everyone in finding happiness and balance
  • hope2015  Jun 12, 2018 6:55 AM
    Jessie, You are an inspiration and helpful to thousands- you go girl! Thank you for what you do.
  • Jenny Lynn Baker   Oct 24, 2018 4:54 PM
    Thank you 🙏 so very much for this blog post! It came at jjst the right timing, as my MS has been progressing over the past couple of years, along with another disability. I also choose to just love, forgive, & be thankful to those who have strayed - despite the painfulness! Truly wish I knew why those that have strayed, honestly did stray - no lies, no gossiping, no excuses- Yet, perhaps it is best to just let it be as it is. Blessings to All! Thanks again.
    • d/x officially in 5/2010, & was informed of quite probable d/x since 2006/2008 •