The Up & Down Emotions of a Diagnosis Part II: The Unexpected Wake-up Call

May 13, 2011
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A very interesting thing happened to me this week. My boss who was previously unaware of my condition approached me randomly at work to vent about her current workload. She spoke to me of taking some time off of work in two weeks to volunteer at a weekend MS camp to show her support for a 20 year old young man that she has thought of for years as an adopted son. She told me that this particular young man was diagnosed with MS at the very young age of 15, and is currently in a wheelchair.

She informed me that her husband was originally supposed to go with her and the young man to the camp, but because of certain circumstances her husband could not accompany her. I felt comfortable enough with her to share that I had MS and for me, being new to the area and not knowing many people and not knowing anyone anywhere with MS, I was quick to offer to tag along thinking that it would be a great opportunity for me. She put me in contact with the young man who immediately gave me the contact information for someone at the local MS Society. Well, I went to the local website and there was a video and a description of the camp. I was quick to learn more than I wanted to about the camp. The local chapter holds 3 MS camps per year. One camp is for children diagnosed with MS, another is for all levels of MS and their families, and the 3rd was a camp for strictly Progressive types of MS which so happened to be the camp that they were attending.

I immediately thought back to the conversation I had with the young man just a few hours previous to watching the video. The young man was describing the camp to me and describing how all the activities were “wheelchair friendly” and he questioned if I was in a wheelchair. Honestly, his question caught me by surprise and I was quick to respond with a firm “No.” Then, he proceeded to ask what my symptoms were. I described my symptoms and for some reason I began to feel guilty.

I felt guilty about my desire to go to a camp where I didn’t feel or appear as “sick” as the other individuals despite having the same diagnosis. I felt guilty that this young man who was 5 years younger than me is in a wheelchair and I am complaining of comparatively insignificant symptoms. I began to feel guilty knowing that deep down even if I see a person in their 50’s or 60’s who have progressive MS in a wheelchair; I immediately get a panic attack and close whatever it is I am looking at because I get terrified at the very thought that that could be me.

I reflected on my thoughts and the events of the day. Here I am, panicking about something that is not even definite for me while I just got done speaking to a young man that while on the phone seemed to be the most cheerful and outgoing person I’ve ever talked to, despite being in a wheelchair. Instead of feeling lucky or grateful to God that I am doing as well as I am; I found myself scared, terrified, and just plain ashamed.

Check back Wednesday May 18, 2011 to read more about the Ups and Downs of a Diagnosis.

Author: Jess



  • http://journal.brokenclay.org Katja

    Jess, it’s been interesting for me (diagnosed 17 years ago, very active in sports and [sorry] using a wheelchair) to read about how deeply fear of the unknown is influencing you. It’s good that you’re examining your reactions head on; I invite you to also consider learning more about what you fear. There are lots of people who, despite or perhaps because of disability imposed by MS, are living full and happy lives. Our lives may not go the way we had predicted they would 5, 10 or 20 years ago – but, MS or no MS, whose lives are? As a young person it can be hard to understand that we don’t actually get to script our future lives – things happen, and sometimes one of those things is MS, and even significant disability does not necessarily mean that we are miserable people.

    And don’t waste the healthy, fully functional years (which, for all you know, may be the rest of your life) in fear. Be happy now about what you can do!

  • Jess

    @93d1c2d70f6c30f741c35afd41be94d4:disqus You are absolutely right. The thing I fear the most about MS is the unknown, and not only the unknown of my prognosis, but also the reason I have it, the medications for it, what causes flare ups, what symptoms I have are related to the MS…everything about the disease seems to be a guessing game and it does scare me.

    I try to be more outgoing and more accepting of it. I participate in charity events and do everything I can to raise money for research etc, and it would be nice to get some answers. I am trying to take one step at a time.

    You are also right. Maybe instead of avoiding what scares me (progressive MS) I should learn more about it. It could help alleviate some of my fears. I appreciate your feedback and the more I think about it you are right. Things do happen in life that alter our future MS or no MS, or any kind of disability for that matter and we just have to live our lives to the fullest no matter what cards we are given. Thank you for the encouragement and I commend your thoughts and attitude!

  • Dixie_squirt

    hi jessica i can only imagine how seeing this camp video and talking with others who have a more pro gressive ms is scary and your emotions of being scared and feeling a bit ashamed and stuff are i think pretty normal i think you should not be ashamed though God has his purpose and we don’t always know it but you forget that i think people with ms know the same emotions you have and you have also got to remember you are a person who encourages people to keep going and strive for whatever goals they have and not give up  and that is something you do so well you, you fight for those who can’t and that is what all people should do that and pray that someday soon there will be a cure and no more ms! 

  • Poohgley

    HI DIXIE, IT”S NICE TO SEE SOMEONE TAKE A FAITH FILLED PERSPECTIVE ON HAVING MS.  I TOO BELIEVE THERE IS A PURPOSE FOR ME HAVING MS.  MAYBE I’M HERE TO TEACH PEOPLE ABOUT TRUST IN GOD, PATIENCE, PEACE.  WHATEVER THE REASON, WHO AM I TO QUESTION?

    POOHGLEY

  • Poohgley

    KATJA, I SO ENJOYED READING YOUR REPLY TO JESS. YOU’RE SO POSITIVE. I TOO AM IN A WHEELCHAIR.  THIS NOT WHAT I HAD FIRST ENVISIONED FOR MY LIFE, BUT NOW I’M EMBRACING THE MS AND FINDING THE OPPORTUNITY IN THE DIFFICULTY.

  • Poohgley

    HI JESS, I WAS ONCE IN THE SAME SPOT   AS YOU.  I WAS RELAPSING/REMITTING.  I AM NOW 2NDARY PROGRESSIVE.  I KNOW IT MUST SOUND SCARY TO YOU. YOU’RE WORRYING ABOUT WHEN AND IF YOU’LL PROGRESS.  I HAD THOSE SAME FEARS.  JUST KNOW THAT THOSE FEARS, THOUGH REAL, ARE ULTIMATELY A WASTE OF TIME.  NO MATTER WHAT HAPPENS, THINGS HAVE A WAY OF WORKING OUT FOR THE BEST.  IT MAY NOT SEEM LIKE IT AT THE TIME, BUT TRUST ME, IT DOES