Tagged with: advocate awareness diagnosis disability family health life
Since being diagnosed with multiple sclerosis 3 ½ years ago I have learned and become to believe that I was diagnosed for a purpose and that purpose was to help others facing a similar situation as myself either through fundraising, words of encouragement, or motivation as they watch to see what I am capable of accomplishing.
One of my now very good friends was introduced to me just a few months following my diagnosis of multiple sclerosis. When I first told her she didn’t really believe me, but when she realized I was telling her the truth she often gave me words of encouragement, but always returned to the facts and to her the facts were:
1) You look okay.
2) You run all the time.
3) No one can tell you have anything.
4) It must be a mild case.
5) I wouldn’t have even known if you didn’t tell me.
6) It’s not a big deal.
I never once let her perception of the facts of my diagnosis bother me. In fact, everyone important to me in my life has a very different view and opinion of what me having MS means to them. I let people deal with it in their own way whether their perception of the “facts” are actually facts or not.
Every year I do at least one charity event for multiple sclerosis and every year I have asked this particular friend to participate in the events with me. Every year her reply was always the same. “I would love to do it with you, but I’m not in shape. I will for sure next year.”
Again, I didn’t let her response bother me. I get denied participation and donations all the time. I don’t take it personal one way or the other. No doubt I can relate anyway as I’m sure everyone can. It’s nearly impossible to give or to participate in every charity whether we have a connection with the cause or not.
However, my friend has recently since changed her perception of the “facts” of multiple sclerosis, maybe not for me, but now the reality has hit her a little more closer to home.
She had contacted me about a month ago and asked me my opinion about her brother. Her brother’s feet were going numb every time he would run and it was really starting to aggravate him. I told her that that particular sensation could definitely be a symptom for multiple sclerosis, but a lot of other things could be the perpetrator as well.
Well, as it turns out her brother finally went to the doctor and with an MRI of his spine and an MRI of his brain, it was confirmed that her brother was diagnosed with the exact same illness I have had for 3 years. My friend called me almost in a panic, uncontrollably crying and told me the news. I did my best to comfort her and to reassure her that a diagnosis was hardly the end of the world. I reminded her that I was diagnosed over 3 years ago and I am doing almost just as well now as the day I was diagnosed. Nothing I said to her seemed to comfort her.
I know my personal quest with this illness is to help others and I see this particular situation as a new opportunity to help someone in need. Her brother who had just turned 30 is just a few years older than I and in my opinion no one can understand better than me what exactly is going on through his mind or even hers. She has already asked me countless questions and I am going to try my best to answer every single one, but what I have learned through this whole experience is that nothing I can say to her will calm her fears or fill in the uncertainty of the illness.
I personally know in my mind that just because I am okay after 3 years that may not be the case for her brother, but like anyone that goes through this situation you have to be strong and you have to be relentless. You can’t let a diagnosis determine your fate. You determine your own fate.
As I have sat back in the shadows and watched my friend abruptly change her perception of the “facts” of multiple sclerosis she now has a different perception:
1) My brother has multiple sclerosis.
2) My brother may not be okay even if Jess is okay.
Once again, I cannot change my friend’s perception, nor will I try, but I can be there to comfort her and answer her questions and that is what I believe my role in fighting this disease is: to be a friend that simply understands.