Many MS Symptoms Are Invisible: We Need to Share Our Stories

Many MS Symptoms Are Invisible: We Need to Share Our Stories
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Like many people with multiple sclerosis, my symptoms are mostly invisible. Many days, fatigue overwhelms me and I have pain somewhere. I tingle all over. I have weird sensory symptoms such as the feeling of water rushing down my back, itchy skin, and the top of my ear feels as if it’s being pierced over and over. Does anyone else get that?

From the outside, I look like any other 29-year-old woman. I don’t look sick. I don’t require a cane or a wheelchair. People are quick to forget what I’ve just told them about being in pain or feeling too weak to stand. 

If symptoms are invisible, how are others supposed to know that something is wrong with you unless you tell them?

This is MS Awareness Week, but raising awareness is only one part of the solution. I believe it is our obligation to educate others. If people understood what it was like to live with a chronic, invisible condition, would they be more kind?

“Nothing can change until the unspoken is said … ” — Keith J. Cunningham 

If we aren’t raising awareness and educating others, nothing can change. Why would it? 

Sharing our stories can have an impact on the world. You don’t have to run a marathon or participate in a 24-hour dance-a-thon (unless that’s your jam). Whether you tell a friend, make a video for social media, or shout it from the rooftops, you’re educating others. Sharing your story could influence government policy, improve healthcare, or change perceptions about disabilities. On a smaller — but no less important — scale, it could help someone else come to terms with their condition. 

When you start talking about your story, you help those with MS and you show others the importance of being kind. Maybe you’ll start a podcast and share other people’s stories. We never know what’s going on in someone else’s life. We only see what’s in front of us.

I understand that not everyone wants to or has the confidence to share their story. I know I didn’t.

After my diagnosis, I hid my illness. I was scared of what people would think. I worried they would presume I wasn’t capable, and I didn’t want to be pitied. It wasn’t until someone asked me on social media about my experience that I started to open up. Before I knew it, people began reaching out to tell me about their illnesses. They said they had not shared with anyone before because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illness. 

That was when I realized that my story was bigger than me and that my experiences could help people.

If you’d like to learn how to share your story, I encourage you to join the Enabled Warriors Facebook group.

What’s your diagnosis story? Let me know in the comments below. 

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

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9 comments

  1. J. says:

    Sharing our stories is a great idea. If nothing else, it gives those of us who have people in our lives that don’t quite “get it” insight from third parties who don’t have a stake in our own lives and stories. I don’t know how many times I had to explain that “foot drop” is a real thing to my partner, that it isn’t about me not watching where I’m going or being a klutz, before she started to *kind of* get it. I gave up on trying to explain that MS fatigue isn’t the same as being tired from a rough day at work, nor is it something anyone who has ever been tired can understand. It’s not the same thing. I wish a nap would solve the problem, but it doesn’t. It would be nice for friends and casual acquaintances to understand that I’m not blowing off their events, shows, invitations, etc out of laziness or because I’m antisocial- it’s usually just more than I am capable of most days, especially during the week after work and parenting duties.

    I’m thankful that my MS isn’t worse- and it certainly could be- but that also doesn’t mean it’s a picnic on a sunny day, either. I don’t expect anyone to bend over backward to accommodate my health problems, but a better general understanding by the world at large about what MS does that isn’t outwardly obvious would be helpful.

  2. Cynthia says:

    Thank you for you post
    I do get that feeling of having piercing done ,over and over….but mine is in my left eyebrow…it makes me wonder how people voluntarily get their brows pierced.
    You are right about fatigue, too….if I tell anyone that I am unable to go somewhere or do something due to fatigue…they usually say that they get really tired ,too , sometimes.It is really hard to describe fatigue….and that I have to lie down because of it.
    I even had one lady tell me that I do not have MS …because she had a friend with MS , and she was in a wheelchair. I almost feel like I have to prove it somehow.
    Thank you again

  3. Linda Pharis says:

    50 years of weird symptoms, and I cannot get a diagnosis. Fevers of unknown origin, itching, lumps under the skin at joints, pain at joints, alopecia that came and thankfully went. Now I have pain behind my ear that feels like post-herpetic shingles pain, it comes and goes, but sometimes I think it’s radiating down my throat and back. Twin walnut-sized lesions show on my brain MRI.

  4. Natasha Riley says:

    Great article. I was “diagnosed” at 30 and it took a “bad” MRI and relapse for my neuro to believe me. So it’s still hard for me to talk about 8 years later. Thank you for using your voice.

    • Shirley Rodriguez says:

      I’m having this same problem. It’s not that I want a dx of MD. 3 legions on my mri. Cspine mri swelling with pinched nerve. Extreme tremors, electrical shock feeling a different parts of my body all the time, dizzy, I have lost my vision twice, first episode 5-2019 second episode 1-2020. Retinopathy 3 fingers and heels of my feet numb, fatigue is unbelievable. Just taking a shower and getting dressed is a task. But I still have no dx ?

  5. Marcela says:

    Thank you for this story. I have been diagnose since my early 20s and as you mentioned, I did not want anyone to know at first. It took almost 10 years for me to share with people. But because my symptoms are “invisible”, even when I tried to share and let people know, they do not understand or give me that look that says “UH”. You do not look sick at all. It does not help, with all this celebrities sharing stories and their physical symptoms, as well as how it affect them and what they are doing.
    I still keep hope, that sharing, will one day, help someone understand, or help when someone else they know, have a chronic disorder.

  6. Donna L. Wolpoff says:

    I have had many experiences similar to The Bouncer for fifty four years now–when I was first diagnosed-seventeen years after my first symptom fatigue was a big obstacle for me. I was thirty five then with six children. I was visiting Chicago, Illinois because I had to attend-with my husband and six children-a big anniversary party for my in-laws. The restroom had a couch I laid down on and my four year old son stood by me. Everyone who came in the rest room commented on how drunk I was needing to lay down–I do not even drink. It was a horrible MS experience.

  7. Richelle Guidry says:

    So I am struggling lately. I have not yet been diagnosed, but my doctor is ordering me an MRI. Since as long as I can remember I’ve been exhausted just as the same as a few of you have shared, I have been told multiple times that sometimes my sleep and naptime take preference over family time and they wish that I could push through. I have been told multiple times that sometimes my sleep and naptime take preference over family time and they wish that I could push through. I wish they could understand. I’ve always said I wanted so badly to feel like everybody else I wonder what it feels like to be normal. I’ve been diagnosed with anxiety so of course I’ve been on anxiety and depression medicine now for at least 8 years. I have trouble concentrating or getting my words out it drives my husband crazy. Over the past two months my symptoms have kind of escalated with numbness and tingling, I get up to use the restroom at least five times a night and random extreme itching attacks. The joint pain in my ankles is what really got my attention because I have always been an active person especially in Pilates and yoga and have had strong Feet. However, as of late my legs are giving out on me constantly due to my weak ankles. I’m trying to stay positive before I know for sure, but after listening to many stories and reaching out to a friend who has MS I am almost positive that’s what my problem is.

    • Jessie Ace says:

      Hi Richelle, so sorry to hear you’re struggling lately. It is a difficult position you’re in never mind trying to explain to family and friends why you’re finding it hard to do things you once found easy. Diagnosis generally takes quite a long time, if you drop me an email over (it can be found on my site http://www.jessieace.com) I can send you some things over that might help you get some answers faster and we can have a chat too. I want to make sure you’re ok. Stay #ENabled lovely, you got this, Jessie.

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