I never thought I would be living with a chronic illness

I never once thought I would be in my 40’s living with a chronic illness, surviving on Social Security because my disease progression forced me out of a career I loved, staying home much of the time because of mobility and accessibility difficulties, requiring regular visits from a home healthcare nurse to help me manage everyday life, and losing friends left and right.

My plans were so much bigger than that.

I dreamed of greatness. I was going places. I was doing things. I had arrived.

It’s important for everyone to understand that our journey in life can change at any given moment…for the good or for the bad. It will be filled with victories and defeats. It will twist and wind through the mountains as well as plummet into sink holes and ravines.

Yes, the journey is important. It’s great to have goals and plans, to be able to reach for something bigger than yourself, to dream. But what I have found to be even more important than winning and losing, bigger than the highs and lows in life, is learning how to handle those victories and disappointments. That’s what matters. It’s not the actual winning or losing that counts, it’s how you win or lose.

I grew up in a huge football town. We took winning seriously and losing hard. When our team won we would have victory parties in the town square with everyone excited and partying through the night. When we lost, although the atmosphere would be more solemn and there would be a lack of cheers through the crowd, we still gathered and celebrated in our loss.

I learned how to win big and lose gracefully.

So when life threw me a curve ball and brought an end to everything that I thought was wonderful, instead of screaming “Why me?” or becoming bitter and angry at the dramatic change, I shifted with the change to find something to celebrate…even in my loss.

Sure, I lost my mobility, strength, career and many friends, but I gained something through it all. I found hope in the darkness. I developed strength out of weakness. I learned how to smile in the pain.

How did I do that?

I decided that regardless of the disease that is ravaging my body and changing my life, that I would find something each day to be grateful for. It may be something little and at times minuscule, but it’s still something.

Today I’m grateful that I woke up to clear skies, birds singing outside my window and a fresh cup of coffee to be able to sip on as I write to you. I wish it was something more than that like I won the lottery or multiple sclerosis was cured while I slept, but I’ll take what I can get.

There is always something to celebrate in a day. Find yours and choose to rejoice in the small victories rather than wallow in the defeats…even if you find yourself lying in a hospital bed, sitting alone on the couch or trudging through rush-hour traffic.

Hold your head high and know that regardless of the speed bumps, the pitfalls and the unexpected turns, you can still find joy in the journey if you look hard enough.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

87 replies
  1. Debbie Mills
    Debbie Mills says:

    As a young girl I never thought I’d be dealing with a chronic disease, but I am it has been 35 years. I am now 57 at least I will be next week.
    I am still walking although I do have a cane now.
    I stopped working out of the house—-remember they call it HOUSE__WORK .you are still contributing. I No longer drive but being the passenger has its benefits.
    I was on Rebif injections for 15yrs There was no major side effects for me. They were concerned about weight gain but it had the opposite affect on me losing weight. I went down to 88 pounds which wasn’t good normally I am thin about110 pounds. I am no longer on any drug

    I do still say on down days ‘this isn’t what I had planned for my life.’to my husband.

    You tend to gravitate to people who are dealing with a life that includes MS or some other difficulty they are dealing with but your true friends will still be your friend. Often they just don’t know how to act with you. It becomes your place to let them know when you need help or can manage yourself. Just remembered that most people love to be helpful.
    Hope th is helps.

  2. Tracy Cleff
    Tracy Cleff says:

    I hear you. In late 90’s I just moved out of state. Great job as a Legal Secretary. Making good money. Bought a house. Then, at age 29, BAM! MS, Narcolepsy, Fibromyalgia on top of failed back surgeries. Now, 46, limited income. Stressing on how to pay for my meds. Many days I ask, What am I here for? I’m waiting.

  3. Susie Jones
    Susie Jones says:

    Me too, I was diagnosed when I was 48 and still able to walk. It only took a year take away may ability to walk, I have a Foley Cath and bowel problems. I too have home healthcare and home cling care. Haven’t lost my friends but don’t see a lot of them much anymore. It’s hard but at least I have a caring husband that takes wonderful care of me. I wish u the best and hope and pray for a cure!!!

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    It’s really gratifying to rea of the goo people that are around for some of you. Too often, it seems, there is a lot of ignorance that feeds a negative feeling to us. It is good to have people we can rely on for the small things in our lives that transform into great things. Some strange things have happened over the past fe weeks and I’m not sure what it is. But I’ve had this before and I’m starting to ‘get use to it’

  5. Margo mckay
    Margo mckay says:

    So very true, MS at it’s worse brings unemployment and poverty, but look on the bright side folks, we can have a lie in on those winter mornings, when all other poor buggers are heading out to work.

  6. Lisa Critch
    Lisa Critch says:

    this post has hit home…..this downward spiral started when I was 47…4 years of learning what I can and cant do on a limited budget….I am alive and I have many many blessings

  7. Frances Gibson
    Frances Gibson says:

    Living with this disability is not easy the fatigue alone and the fact that u can no longer go out to work is so devastating for any young person ..a lot of people don’t realise how much off a daily struggle it is my son got his devastated news when he was 33 with a young family to rear life is a daily struggle ..

  8. Linda OCONNELL
    Linda OCONNELL says:

    Thank you for your inspiration Penelope. I don’t know how you do lt. I’m having a hard time living day to day. I’m 69 and retired. My hubby is 75 and still works because he loves his job. I was diagnosed 3yrs ago after having symptoms for over 20yrs. I was always told it was anxiety, depression and panic attacks and was being treated as such. Finally my doctor sent me for an MRI which showed the lesions and then I had the spinal tap and everything else. I don’t like the fact that I can’t plan ahead because I never know how I will feel. I also lost 8 family members in the period of 9months with my 38yr old daughter Megan who hung herself due to domestic violence leaving 3 beautiful children and a promising nursing career being the most recent. I am so overwhelmed that I find it hard to be positive about anything. I do go to therapy but it hasn’t helped as much as I thought it would. So I have to admit that I do feel sorry for myself and regret not doing things I should have done and wanted to do. I always thought I had tomorrow. My husband is a good man who understands and is a big help to me. I hate the fact that I used to be so active and now I feel so weak everyday. I sit alot and cry.I dont drive because of my eyes and I have no close friends except one in Florida and I am in Connecticut. Please don’t think badly about me. I feel for all of you. I just don’t know how to pull myself out of this negativity. I do try to be really positive and post alot on Facebook where I have many friends. But just when I think I feel better, something acts up. Can anyone give me advice on how to deal with this? And I do know that feeling sorry for myself is a bad thing and I DO NOT like feeling like that. But it prevents me from moving forward and then I go into a deep depression and sleep for days off and on. I am begging for any advice you can give me that will help me in this journey. Thank you for reading my story and I hope you understand. I know that there are so many people that have it worse than me and I feel for everyone of you. My email is lindaharley47@g******** or you can send me a friend request on facebook or messenger. Thank you again for taking the time to read this post. You will never know how much I appreciate it. Love to you all.

    • Carla L Broadbent Rogers
      Carla L Broadbent Rogers says:

      Warm hugs and strong prayers on the way to you…..how and always. We MS’ers are stronger than we think. Be well.

  9. Leslie Beaver
    Leslie Beaver says:

    We never know until we know. True for everyone of course. But the variety of possibilities increases for those of us with a chronic illness. Just another part of our new reality that we need to acknowledge and embrace. As best we can.

    • Lori Doonan
      Lori Doonan says:

      Relaxation techniques are key. Yoga, meditation and a Psychologist just to name a few. You really have to incorporate new methods into your daily routine.

    • Carolyn Oxenham
      Carolyn Oxenham says:

      Mine turned around when the psychologist got me to think not negatively. You can be positive too, but start by not thinking negative. It’s okay to be upset, sad and ho-hum. And it is also okay to Google puppies, it is okay to just stop and look at flowers, it’s okay to smile for no reason. All these non negatives help. As you gradually build them up, they become more routine. I truly hope you are some sunshine in this cloudy day. Xx

  10. Christina Beaton
    Christina Beaton says:

    So very true. You certainly learn how to see light in the darkest of times and find out who your true friends are. My husband has now been diagnosed with a similar neurological illness to my MS so I’m trying to find some positivity somewhere. Our retirement plans have gone up in flames. It’s hard and life is not fair but have to keep on fighting.

  11. Heather Adsit
    Heather Adsit says:

    Well said 🙂
    Today is a good day because we woke up 😉

    I am trying to keep up with my friends work out challange.
    Sure I’m not getting it all done… and yes I’ve fallen from to much… but I’ve done some of it… every day 🙂

    It’s the small things that count 🙂

    • Heather Adsit
      Heather Adsit says:

      Waking up makes it a good day 🙂
      Another chance to fight MS.
      Another day to try and make it a good one 🙂

      For me waking up is good 🙂
      I’m a mom and not waking up would be the worst… so every day I wake up I’m thankful for it 🙂
      Hope you have a good day 🙂

  12. Michele Slade Sasser
    Michele Slade Sasser says:

    It can be so disheartening what the changes chronic illness bring in our lives. I look back 20 years ago and can see how my life has changed, how MS has chipped away at my life. I try and stay positive, I feel like I am but there are times when I just feel overwhelmed and scared.

  13. Christine Mcneill
    Christine Mcneill says:

    I’m exactly the same and I hate the thought of anybody being in our position I had my life all planned out too but it’s not to be as the saying goes what’s for you won’t go by you …….apparently hope your ok❤

  14. Sharon
    Sharon says:

    Thank you for making and taking the time to share. Know there are days it must be a huge challenge. It is truly appreciated. Been at this for 27 years and you are so right. We need to be grateful for the small things every day though at times a great challenge.It is so true too to miss the life you had and accept that way of life is gone.

  15. Margaret Davies-Lander
    Margaret Davies-Lander says:

    It’s been 9 yrs since my diagnosis even though they fgure I’ve had it my whole life! I feel exactly the same way. I don’t have many friends left and had to move in 2008 so I don’t have family here, they do come once a year though. I thank God for my husband, sn and daughter!

  16. Nellie Reyes
    Nellie Reyes says:

    dear penolope I took the liberty of sharing some of your articles, not only they express my feelings and life to a “t”, I’m also hoping my love ones can learn about MS in a way I have not able to do. Thank you from the bottom of my heart.

  17. Kristen Camero
    Kristen Camero says:


    You could have just written my story with MS in your post today…
    Except, I still have a hard time with the find happiness in each day part 🙄 Having been forcibly retired at 40 & slowed now each day of necessity is still irksome to me.

    But I try to find the happiness, & your posts help remind me. Thank you for always being positive & happy 😊

  18. Josephine Regan
    Josephine Regan says:

    Thank you for that today you are so positive yes we all have so much to be grateful for as my friend said to me when I was diagnosied first with ms you might have ms but dont let ms have you .It can be very difficult at times but positive attitude and good friends are very important xxx

  19. Meeya
    Meeya says:

    Your positivity is not only essential, but also contagious, and this is great & SO important to all of us!!
    Your post is one of my highlights today – and that it only took me 10 minutes this morning to put on my winter boots (with laces and all!) )😁

  20. Lauren Singer
    Lauren Singer says:

    Gratitude/ There is so much to be grateful for. I was young when the beast first came. I have had bad decades and good days. And for those I am forever grateful.

  21. Theresa Rose Lake
    Theresa Rose Lake says:

    It’s been going on for me officially a little over two years but a lot longer than that before the doctor’s finally got their heads out of their a** and figured it out. My life seems like a never ending roller-coaster ride and most of the time I can’t understand why I have to go through this. You talked about friends, you truly know who your real friends are when you are down and need someone….I am finding that out the hard way. We are all in this together and I will pray for better days for you!

  22. Anne-Marie Dunks
    Anne-Marie Dunks says:

    I’ve been living with MS for 7 years on 27th January & my life has been a rollercoaster of ups & downs.
    Today’s a down day even though it really shouldn’t be but I’m taking a time out to pick myself up again.
    Life can be cruel but we have to face each day as it comes & find a way to manage it. Best wishes & keep going because your positivity is essential xx

  23. Ayesha Holiday-Dixon
    Ayesha Holiday-Dixon says:

    I am so glad that you said that, because that’s the way I feel. But I thank God for my husband and my family and my daughters. But I never thought I would have to depend on people to go with me to the doctors because they are afraid that I might have a seizure while driving. I been living with this monster for seventeen years and counting and I never thought I’d have to wait for people to help me. It’s so depressing.

  24. Edessa R Nano
    Edessa R Nano says:

    I love reading all your stories because I feel the same way you do … all your stories mirrors my life … it feels good to know I’m not the only one feeling that way
    Thank you

Comments are closed.