What I want the world to know about my MS is…

MS Awareness Month is coming to a close with World MS Day – a day for global solidarity in the fight against MS. In honour of World MS Day, we asked our community to share their acts of greatness. All month long, we’ve asked our MS community to send us their answers to the question: “What do I want the world to know about my MS?” Here’s what you had to say:

*Responses have been edited for grammar.

“Some days, I’m Superwoman and run up the stairs, then some days, I need my cane and can barely speak an articulate word. Please don’t judge me for having the energy to climb mountains one day but not get out of bed the next. I try hard every day. This is way harder and scarier than anything I’ve fought before, but I will always rise and fight and find joy in every damn day.” – Carol

“I want the world to know that we are warriors, fighting battles every single day, with both seen and unseen symptoms, fears, and challenges that threaten our strength and hope. We absolutely deserve the right to have accommodated employment when we are able to work, accessible events and locations when we can get out into society, financial supports for safe, secure and comfortable housing when we are unable to provide for ourselves, judgement and oppression free interactions within society and systems, acceptance from the world that were are valuable no matter our challenges and the freedoms to live our lives to the best of our abilities!” – Elizabeth

“I am not drunk.” – Lisa

“I want people to know that MS has turned me into a liar. When people ask me how I’m feeling I put a smile on my face and tell them I feel great. When they ask me if I need help with something I tell them ‘No I’m fine.’ I make up excuses when I forget stuff or turn down invitations. I know people don’t like always hearing someone whine about their illness so I lie all the time.” – Theresa

“I’m not lazy. And when I say I’m tired, there is a difference between MS tired and regular tired. Napping less and getting outdoors is not going to help me in the middle of a flare up. I’m not doing this for attention. If you can see me struggling it’s because I can no longer hide it. I’m not going to be like other moms. Sometimes TV will be the babysitter. I’m doing the best I can. I’m not trying to take something from anyone else when I need to sleep or need to use a wheelchair. If I’m out in public in a wheelchair or with a cane, if you can’t be nice or helpful, please for the love of all that is holy just ignore my existence. But no, your children cannot climb over me, it’s not actually ok. I still have the dreams I had before my diagnosis and it hurts.” – Courtney.

“Indescribable, unimaginable, unpredictable and invisible. The only thing that I can count on is uncertainty. Please understand how hard we work every day to manage. You see me looking well with a smile on my face but do not see how it feels or the moments it gets to me. We are strong, we persevere, but sometimes we just get tired of the battle. Be kind — not all struggles are visible.” – Helen.

“The fear of never knowing when symptoms will arise affects me everyday and is exhausting.” – Jessica

“I look fine on the outside because I can cover it up so well. When I’m off-balance I wait till I am not dizzy

to take my next steps. My legs are numb but I walk so you can’t tell something is off. You can’t see the struggle inside.” – Le Anna

“I want the world to know that my MS taught me that I am stronger and braver than I ever realized before my diagnosis” – Sara

“It’s been 23 years and I’m running a 10K tomorrow!” – Adam

“MS isn’t a death sentence for me. MS may take my body but not my spirit. It’s a new angle of doing things. It’s a new perspective of how to live life and I’m okay with that.” – Ruthanne

“MS is life-changing but not life-ruining.” – Alannah

“I don’t mean to lose contact with my friends. But I am so tired that visiting, talking on the phone, emailing or otherwise trying to interact can leave me exhausted for hours or days. It is worth it sometimes, but I can’t do it all the time. Please don’t give up on me or forget about me, because I miss you.” – Liz

“MS doesn’t define who I am. I’m a daughter, sister, friend, wife, mother to two outstanding young men. I do my best everyday. I have CVID and MS. My life is a balancing act. If I don’t stick with my schedule I will fall apart. MS flareups will hit you when you least expect it, like it did yesterday. So I cancel life and take care of myself. I’m going to beat MS — the secret is to keep moving. Keep active. I choose life.“ – Wendy

“Living with MS is being the best you can be for that day.” – Roxanna

“MS is my diagnosis but not my identity. I am so much more than this disease. I am strong. I am caring. I am smart. MS has not diminished these qualities. MS has amplified them.” – Kathryn

“MS has so many question marks. My future now with many uncertainties and unknowns. It carries a stigma that I am weak, when in fact it made me strong. It taught me to care for myself, focus on my well-being and live my life to its fullest. My MS has so many possibilities and I’m excited to define it my way.” – Kalla

“MS fatigue should really be called ‘I am so tired I would like to be put in a coma but I am too tired to pick up the phone and ask someone for help with that.’” – Patricia

“MS makes me value my life more. I’ve learned to live with that monster in my brain and spine everyday. It doesn’t stop me from still being a flight attendant, event decorator, volunteer, wife and mom to my two boys. There are people out there who have MS and lead normal lives and continue to carry on like everyone else.” – Tina

“That it changes every day. That nearly every day I wake up feeling the way they do when they wake up with the flu. Some days it gets better as I get up and get moving, some days it doesn’t. Some days I can’t open a milk carton. Some days I can ride my bike 20km. Most people know, but it’s really hard to get it. I’ve been diagnosed for eight years now, and it seems like I should be getting better already – but that’s not how it works, and I suppose that’s what I really need people to understand.” – Christine

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