What are your thoughts about support groups for something you have been diagnosed for? Over the span of 34 years living with MS, I have joined and left a few MS support groups. I never felt good about reading negative comments about MS and believe me there are so many comments it becomes depressing and shows no hope. I expected some negativity, but this last one I am in just literally blows me away and I must stop reading the comments just to keep my sanity and to stay positive with this uncurable hard ass disease. I am still debating if I should leave the group or just stay in it in hopes of reading some positive posts. As of today, there were none.

Looking back on my diagnosis in1991, (please understand this is just bits and pieces, my journey is very long) I remember being so confused (I was still seeing double vision that was going on one month, and I was just not feeling well). I was angry because I did not understand what was happening. The neurologist prescribed 80mg of prednisone, gave me a 2-page folded pamphlet to read. The neurologist that bluntly diagnosed me told me to go home, read the pamphlet, and come back in 3 weeks for a checkup. No support, no encouragement, no optimism – just flat no emotion in his voice on the advice. He never showed the MRI scans or thoroughly explained what they saw on the film. Today’s neurologist’s diagnosis or explanations are a little bit better in terms of explaining, but not much. This was the beginning of my long journey of trying to understand what MS is. Back then the internet was just becoming popular. There was no definite research on MS on the internet until a few years later. Explaining my diagnosis to my family was tough because I didn’t understand. My mother especially wanted me to explain on the TTY (A TTY device has a keyboard for typing messages and a screen to display incoming text. When a TTY user makes a call, their typed message is converted into audio signals that are sent over the phone line. The receiving TTY, or a relay service, then converts those signals back into text for the recipient to read). I couldn’t really talk to my mother because I was seeing double vision. Reading her messages was difficult. My sister had to voice the words on the TTY to me. It’s comical as I am writing about that today, Deaf mom, using a TTY, me seeing double vision trying to read and type, my sister hovering over me and the TTY voicing what was coming up on the screen because everything was double. We were all stressed that day.

I never met anyone who had MS until I moved to the Orlando area. Some rude awakenings there with this person I met at work and learning about other people with MS. It was never a positive experience, and it was always negative and depressing. I learned for myself that if I had to live with this disease, my life needed to be as normal as I could make it, and people’s (especially family and friend’s) negativity was not my problem nor was it accepted. A very hard and lonely journey especially when someone does not understand. The last few days while resting and recuperating from the recent 11-day hospital stay I became very depressed, and my anger returned after reading a lot of the group comments. Today I am reading and starting to decide that this group is just not helpful for me. It is strange because that group has a large MS following. I am guessing that people thrive on negativity.

Looking back on the years I feel extremely fortunate. My exacerbations were not many, and the recovery time was 3-4 weeks with a lot of rest, positive attitude and healthy food. Things did return to normal. I learned to deal with the nasties of life and people. I had some good turnouts and some not so great. It is life regardless of the disease. The nasties will always pop up with family and friends. There is nothing that can change that other than my attitude on how to handle it. I know if I react, I will get sick. I must remember what is important “me” or what other drama that comes with family and friends.