A patient’s voice

screenshot_1526My name is Amy.  I am 28 and was recently diagnosed with MS . I came across your website while conducting one of my many searches to learn about MS and I want to share my experience with your readers.  I believe that people who work within the industry like you can learn from people just like me.I am a 28 year old, single, professional woman. Last year when I started to have problems with my vision I was diagnosed with optic neuritis but I still didn’t feel like myself.  I had to go back to my doctor a number of times and request a referral to a neurologist. After a spinal tap it was confirmed that I had MS.

My first reaction when I got home was to go online and learn as much as I could about MS.  I mostly wanted to know what to expect, my treatment choices and how I could live with MS.

I spent countless hours online reading information that was probably best written for medical students.  I even purchased an online medical dictionary so I could understand some of the complex terms used within websites.

I went to all the top health websites like Yahoo health and Web MD but found that they only provided part of my informational needs.  I even thought about going to Patients Like Me but I am not comfortable having my personal information shared with drug companies when I just want to hear from others like me.

I only went to some drug company websites when my doctor talked about certain drugs but those sites didn’t really speak to me as a person.  I understand that they are limited in what they can say but surely they can do a better job of communicating with me as a real person.

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To date my treatment options have been limited to steroids because I am afraid of other prescription drug treatments.  I did go on Twitter  and read others experiences with some available treatments but I am frightened of their side effects.

What was really missing, for me was advice on how a single woman, who hopes one day to get married and have a family, can live with MS.  I mean, if I get serious with a steady boyfriend how and when do I let him know I have MS?  Can I have a normal sex life with MS?

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I really wanted an app for my iPhone so I could track my MS symptoms.  I thought an app like this would be handy to let me know when it might be time to see my doctor or go through another round of IV steroids but I haven’t found one yet that really helps me manage my MS.

I like the idea that you communicate within your site to put patients first but I would also cast a vote for content that talks to me as a real person and addresses my concerns. Talk to me like you talk to a family member don’t spew generalized and generic health information because I can get that on Wikipedia.

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I am an MS patient and I want to be heard but I also want to know that the medical community cares about me because right now I feel lost in a system that treats patients not people.

One thought on “A patient’s voice

  1. A PHYSICIAN isn’t like a Mechanic ; we assist people, not cars. At the Faculty of Medicine they give us the ‘tools’ (medical knowledges), but not the empathy, the good rapport we need to have with an individual patient. Again, we must to keep updated at our Specialty, but being updated doesn’t necessarily means we are doing a good job with the individual person in front of us… because as humans, no one is identical to another, even with the same disease on. Usually, a Doctor acquires that ability after caring from different people along some time… Should he or she doesn’t, chose the wrong career, may be only a good memory owner. Better changes to research in a Lab, I guess. When we Doctors became diseased ourselves and have to consult another, only then we may see the point…

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