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After 38 Years, Here Are 8 Things I Learned About Living with MS

This year marks 38 years since my MS diagnosis. Since then, the learning curve has been steep, from having little knowledge about the disease and no MS medications to a growing number of approved treatments and overabundance of information. How marvelous.

In tribute to raising MS awareness, this is a fraction of what I’ve learned is true.

8 things I have learned about living with MS

Every person with MS experiences the condition differently. And it’s common for individuals to struggle and reach acceptance of their diagnosis at their own pace.

Choosing whether or not to reveal your diagnosis to friends, family, and colleagues is entirely up to you. There is no right or wrong choice.

Feeling at ease with your new normal is never easy since MS is, unfortunately, unpredictable. Learning to lean into sudden or gradual changes (such as numbness, weakness, bladder dysfunction, or cognition) as best as possible is where I think the magic is. If you can’t lean in, don’t judge yourself harshly. This isn’t something you were born to do.

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Your beautiful, powerful voice will always matter. Sharing your story and listening to others is an excellent gift to the community and the world. Your voice can change legislation, awaken others' senses, and teach awareness about living with MS. There are endless ways to make a difference, and you can decide which path to take.

Be true to yourself. I find it important to not compare my MS journey to others. Social media can be a danger zone. How many likes and comments there are on someone's feed never determines that others are better, more popular, or brighter than you. That doesn’t matter. What matters is that you take one day at a time and do your best within your abilities. If or when a bad day comes, that’s okay. It happens to everyone. So be true to yourself. You know, to thine own self be true.

Keep an open mind to complementary medicine practices such as massage, acupuncture, energy, and mind-body therapies.

Communicating with others may help you better navigate your journey. Cultivating relationships is essential to staying physically and mentally healthy. Nurturing friendships, speaking to a qualified therapist, and joining groups such as a book club or MS support group in person or online are some examples to help you create your support system.

You are in charge of creating your MS medical team. It is crucial to feel open, comfortable, and understood by a doctor and their staff. Don't accept anything less than you deserve. If you feel you're not being heard, speak up and explain how you feel. If the problem persists, it's time to change doctors.

What have you learned about living with MS?

I could write Part Two to this post about what I've learned is true while living with MS! Let me know what you learned during your time with MS; I would love to hear what you have to say.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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