What do you do when you don’t know what to do?

By Penelope Conway

My life turned into a whirlwind of chaos after I was diagnosed with multiple sclerosis. I was faced with more choices than I knew what to do with. Which medications do I choose? What therapies are needed? What supplements help? What diets work? Is there really a cure? So many questions and so few answers.

My internet searches for help overwhelmed me because everyone seemed to know exactly what to do but no one really did. Every time I found something that might help I also found a contradicting story saying it didn’t work. What do you do when you don’t know what to do?

We live in a society filled with opinions. Opinions about what a person should wear, what they should eat, where they should live and what kind of work they should do. It seems everyone is an expert at everything. You can’t do or say anything today without someone voicing an opinion.

If we spend our time listening to all those voices, we will go mad…absolutely mad. I know people mean well, but the judgmental, know-it-all attitudes have got to go. When I was a healthy person, I would get a lot of opinions thrown at me about how to live, but now that multiple sclerosis has taken up residence in my body I’m bombarded with even more opinions.

I’ve heard how everything from bee sting therapy to removal of dental fillings will cure me…after all someone’s cousins, brothers friend was cured that way. If only I would just rub Calamine lotion all over my body while standing on one leg and singing I’m a Little Teapot at the top of my lungs…I’d be cured. Why am I not doing it? I must not really want to get better.

Have you ever wanted to just smack someone like that upside the head? They mean well, but come on. Amazingly you can find countless sources online to back up any idea you hear of if you look hard enough. If you choose to believe that the sky is purple with green polka dots and want to prove your point, I’m sure you could find a website out there that would validate it for you.

Living with MS is not easy. We all want a cure to be found and help in being able to manage our everyday life with the unpredictable symptoms we are faced with, but we don’t need to be criticized or judged by others for the choices we make. There are different types of MS, differences in the people living with it and different progressions that can happen. That’s a lot of differences to try and cram into one fix-all solution.

How about this? Do your research, talk with others more knowledgeable than yourself about MS, then shut out all the opinions flying around and choose to simply do what you believe is best for you. You know your body better than anyone else out there. You know your needs, what works for you, what doesn’t and what you’re willing to endure. You be in charge of you. You will be so much happier when you do.

Celebrate the life you have today because there is still a lot to celebrate even with MS hanging around.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. 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.

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.


  • Julie Halloran me says:

    What do you think about Lemtrada

  • Judy Talbott says:

    My daughter is 19 and was diagnosed with MS 1 1/2 years ago. She is taking the medicine “Lemtrada”. She had to put off college because of all this. She is now thinking of starting with on-line college. Does anyone know of any grants of loans that are geared toward helping someone with MS?

    • Angel Blair says:

      Hello Judy, thank you for reaching out, I’m sorry to hear that your daughter had to put off her schooling due to MS but I’m glad that she’s pursuing it once again. For possible scholarship assistance there is a scholarship program offered through the National MS Society, http://www.nationalmssociety.org, and an organization called the PreJax Foundation, http://www.theprejaxfoundation.com/, and the Patient Advocate Foundation, http://www.patientadvocate.org/help.php?p=69. She can also check with the school directly to see if they provide resources for financial aid or assistance through their financial aid office. I wish her the best with her education and hope these resources can help. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist

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