It’s on the Inside: Living with an Invisible Illness

  • by Melissa L.
  •   September 25, 2017

Melissa L. is a paid Advocate for Teva Neuroscience, Inc.

How I’ve learned to live with my invisible RRMS symptoms

“But you look so good; you would never know you have MS!” This is something I hear whenever someone finds out I have been living with a relapsing form of multiple sclerosis (RRMS) for 13 years. When you look at me, you see a woman who is a wife, mother, preschool teacher and volunteer. You see someone who exercises, drives a carpool, attends sporting events, participates on school boards and more. What you do not see is a person living with a chronic illness. Some people with MS, like myself, have symptoms that cannot be seen from the outside. The majority of my RRMS symptoms are fatigue, cognitive issues, weakness, blurred vision, tingling and numbness, to name a few.

I know everyone gets tired, but I experience a fatigue like no other; a fatigue that is hard to explain unless you’ve actually experienced it. From the moment I wake up until the moment I go to bed, fatigue is present. Unfortunately, as a mom of two busy boys, lying down is something I do not do often. As a mom with RRMS, I tend to feel somewhat guilty. There are times when I am unable to participate in family activities because of my fatigue. I also need to go to bed early because by the end of the day, I am exhausted.

As we get older, we all become somewhat forgetful, but cognitive issues are very common and can affect the daily life of somebody with MS. From not remembering whether I closed the garage door to referring to my children by the dog’s name, my cognitive issues are present. These are not major problems, but sometimes, it makes me feel absentminded. In my home and car, you will find sticky notes everywhere. I tell my family to write down whatever is needed, because if it is not written down, I may not remember! My boys have a hard time understanding this, because they feel there is no reason why I should not remember certain things. My husband likes to call me “Two-time Melissa,” because there are times I will ask a question, and a few minutes later, I will ask the exact same question. During my everyday life, when issues like these arise, I feel I need to remind my family that I do have RRMS and cognitive issues affect me a great deal.

Living with these symptoms can be frustrating at times. I think people tend to forget that I do have a chronic illness because “I look so good.” Sometimes, a gentle reminder and continuing to educate my family and friends about RRMS and how it affects me goes a long way.

Melissa L.

RRMS Patient

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32 Comment(s)
  • Marilyn | September 26, 2017
    The fatigue & cognitive issues sounds just like my daily struggles. People laugh with me a lot. Down deep, I am not sure they realize it is MS. My neurologist told me 29yrs ago that the short term memory part of my brain was the largest damaged area. This summer in Texas was rough. I have had to really reduce time outside this summer. Frustrating!!!!! But, I know I am blessed.
    • Teva's Lift MS Team | September 27, 2017
      It sounds like you have been through a lot, Marilyn. We hope you find comfort in connecting with other members of the community.
  • Margaret | September 26, 2017
    Hi, Melissa. Yes. Fatigue for me has long been a presenting and problematic symptom. I worked as a nurse for 32 1/2 years before retiring some four years ago. I think that while my family and friends knew that I had Multiple Sclerosis, that when I needed to nap etc. that they more or less just regarded me to be unmotivated. Good news, there's medicine for fatigue now.Talk to your Dr. :)
  • Diane | September 26, 2017
    I don't know how you do what you do. It must be hard but you must persevere when you live your family.
    • Teva's Lift MS Team | September 27, 2017
      Thank you for sharing, Diane. We wish you the best!
  • becky | September 27, 2017
    i too have been diagnosed since 2014, truly blessed at 49 it came late in life, but we who have it understand all. even though it is different for us all still similiar. thanks for what you do
    • Teva's Lift MS Team | September 27, 2017
      Have you visited Teva’s Lift MS Facebook page, becky? There, you can read other relatable stories from Care Partners and people in the community. If you are interested, you can find it at https://www.facebook.com/liftms.
  • Tanya M. Wilson | September 27, 2017
    I feel the same way. People won't know I have had RRMS for 25 years until I get up to walk. Very hard to do it. Sure can't walk a straight line. I do have cane and wheeled walker. I prefer, of course, not to use either. So I'll run in gas station or corner store without them, depends on how I'm feeling. I stay awake once I'm up in morning, taking My 16 year old to school. I'm 47 w 2 boys 19 & 16.
  • Larry | September 27, 2017
    I find all of this very helpful, thanks.
  • Geneva | September 27, 2017
    I have all of the symptoms that you described. The fatigue is unbelievable. How do the doctors test for MS?
  • Bonnie | September 27, 2017
    I am so sorry for what you are going through.
    My prayers are with you and your family. I am 73 my problems came on me later in life and nothing like yours. Thank God you have a loving family. I have list friends much older than you that had it.
    Stay as active as you can and rest as much as you can ( I know it is easier said than done) only you know how you feel. Your in my prayers
    God Bless you.
  • David | September 27, 2017
    I too have MS and hear the same thing. I am beginning to understand the comment " if you have a disease don't say anything about it. 90% of people don't care and the other 10% are glad you have it". I can relate to this feeling!
  • Marquita  | September 27, 2017
    I hear what you are saying.i deal with it everyday of my life.its not easy,but I manage.good luck with everything you are going through.
  • Barbara  | September 27, 2017
    I feel exactly that way, plus a lot of other things going on. My Nero Dr told me I was to old to have this!!! It just didn't start yesterday, iv been on SSD for 20 yrs. I'm 72 now!!!!!!
  • Colleen | September 27, 2017
    I have been diagnosed with RMS for 2 years now. My hole world is turned upside down. A very active person love the out doors,kept up with 7 grandkids, worked in the local school cafeteria. I have quit work, can not work out side because of the heat, and the worst is I can not do a whole lot with my grandkids. I am sixty. Every one says wow you lost weight and look good. I put up a good front.
  • Darlene | September 27, 2017
    Melissa I mirror you in many ways..
    I have felt so very Blessed as a year ago I found something that helps. Check it out. EHT.. enough said.
    Like a goof ball I went on a trip to FL last week.. does napping and melting sounds familiar. Lol it was fun regardless. Don't forget to smile and live !
  • Julie | September 27, 2017
    Thank you for sharing your story that so many of us "looking so good" individual share. Continue to educate your loved ones and get rest when you can.

    From Another RRMS Working Mom.
  • Charlene | September 27, 2017
    I am so happy to read someone understands what I go through daily. People say.but you look so good, or they are tired too. I get frustrated repeating why I forget things in a split second. People say but you look so good. They don't know how looks are truly deceiving.
  • Sam | September 27, 2017
    I have rrms I go through it all everyday only the pain somedays are worse then others. I miss alot of things with my grandchildren. I would not wish MS on my worst enemy.
  • Laura | September 27, 2017
    I also have been living with RRMS. Dx in 2005. I know exactly what you mean about the "but you look so good!" I, unfortunately had to stop working in 2011 due to my cognitive issues. sometimes I feel guilty for not working but I know I'm here for a reason. I have a son who has had drug issues and my husband and I have a 2 1/2 year old grandbaby who keeps me going! I am tired always
    • Teva's Lift MS Team | September 28, 2017
      It sounds like you’ve been through a lot, Laura. We’re glad you’ve reached out for support. Let us know how we and the community can help.
  • Zetha | September 27, 2017
    I agree. I to have RRMS! Have to write Dr's appt. On calendars people always say you look good! If they only knew how I feel!! The tiredness, fatigue, the PAIN!! Is off the chart!! I have to remind my family on occasion that I have this disease!! Diagnosed in2006! The flare ups are more common as I get older! New symptom: headaches!! People must know with this disease we suffer in silence.
    • Teva's Lift MS Team | September 28, 2017
      Thank you for sharing, Zetha. We wish you the best!
  • Andrea | September 27, 2017
    I can relate to pretty much everything you said Melissa. It's frustrating that I say or ask the same question over and over. I feel for you and everyone that is going through this.
    • Teva's Lift MS Team | September 28, 2017
      We understand life with MS can be challenging, Andrea. We hope you continue to lean on this community whenever you need support.
  • Debbie | September 27, 2017
    I couldn't have explain it any better. The chronic fatigue...I can sleep 12 hours & still be tired. I have cognitive issues, short term memory lapses. Numbness in lower limbs. Depression. Falling. It's not easy raising a family & working...but I succeeded

    It's been over 25 years with R/R MS & im still fighting👍🏾💪🏽
    • Teva's Lift MS Team | September 28, 2017
      Please keep us posted on your progress, Debbie. We’ll be thinking of you.
  • Cindy Cound  | September 27, 2017
    Thanks for sharing this...i feel the exact same way!
  • Renee | September 28, 2017
    My daughter is battling ms.she has gd.day and bad.u have to stay focused on uive u got deal with make the best out of ms.udont HAVE time for ms.to keep u down u keep it down.never give up fight on cry on hold on PRAY on never give up. God WILL PROVIDE.
  • Cindi | September 28, 2017
    Thank you for this post. It is as if you are a mirror of me.
    • Teva's Lift MS Team | September 28, 2017
      That's great to hear, Cindi! We hope you'll enjoy reading more of the posts featured on the blog. Let us know what you think!
  • Dee | September 28, 2017
    I feel the same way. I have heard but you like so good. I feel as tired when I get up in the morning as when I went to bed the night before. Its good to know there are people like me do I don't feel like the only one.
  • Terri | September 28, 2017
    I sure understand how you feel Melissa. I go through the same thing that you are talking about. We just have to get through, and try to support each other. Thank you so much for your post. It means a lot to those of us who are suffering with relapsing remitting MS.
  • Brenda | September 30, 2017
    Living with MS for 10 years, on a daily basis, constant struggles with memory/cognition, fatigue and vision are the most difficult to explain to someone unable to see what you deal with. Being able to make others aware of the struggles of living with this "invisible illness" will help make them understand the unpredictability of this chronic disorder and what is does to them.
    • Teva's Lift MS Team | October 02, 2017
      Thank you for sharing, Brenda!
  • pam | September 30, 2017
    I like this app. I have had MS since 1999. It helps to read about others.
    • Teva's Lift MS Team | October 02, 2017
      We’re glad you like the blog, pam! Check out Teva’s Lift MS Facebook page: https://www.facebook.com/liftms. We think you’ll like it.
  • Karen | October 05, 2017
    I get you. Sounds like I wrote that! I am a wife and mother and a retired preschool owner and teacher. I was already on disability for another (invisible) disease when I was diagnosed with M.S.
    That was a bit of a blow. So now I'm learning to find a balance in my life to be able to enjoy all of the great things I do have in my life. Thank you for your article.
  • Mark | October 07, 2017
    I have the same problems. New bosses at work are not as understanding as the old ones about it.
  • Cindy | October 20, 2017
    This is soo soo true! And I'm getting worse with all of the symptoms..having had this disease for 14 years. I make lists of everything..where I have to go and what I have to do When I get there. Also of phone calls I need to make and have had to start putting all my appointment in my phone so I won't forget them. I also forget what I'm talking about and can't find the word I'm looking for..
    • Teva's Lift MS Team | October 23, 2017
      Thank you for sharing with the community, Cindy.
  • Ray | October 20, 2017
    I Agree With You 100% I Have Sticky Notes All Over My House It Helps.
  • SUE | October 22, 2017
    Same with my husband - looks good but suffers every day. Keep up the good fight when your kids get older and realize what a super hero you really are, they will love you even more. :)
    • Teva's Lift MS Team | October 23, 2017
      Thanks for sharing your positive attitude, SUE. We appreciate your contribution to the Lift MS community.