The Jan Brady of MS
I think I am past the stage of being an MS newbie. It has been 6 years since my official multiple sclerosis diagnosis. There is no written definition of "newbie," but it is safe to say that more than a couple of years means I am not one. Being new to multiple sclerosis is a bewildering time. There is so much knowledge to absorb. There are many choices to be made and things to figure out. The medical questions seem to pile on top of themselves while the answers feel few and far between.
Love and support from others with MS
A new diagnosis also means welcoming by a new community. As a group, multiple sclerosis patients are kind and thoughtful towards our fellow patients. When a new person joins the community, we reach out with open arms and offer of ourselves. We don’t just offer information. We give support and love to our members, especially new ones. I received a lot of love and support from other MSers right away when I disclosed. I was embraced and given hope. I was given good advice, when asked for, and solid information that only a fellow traveler can give. As difficult as my diagnosis was, I did receive a warm blanket of caring wrapped around me.
I am no longer new to MS
Everything about multiple sclerosis was new, including me. I am not a newbie anymore and it feels kind of weird. My feeling oddly about not being newly diagnosed is well...odd. I compare it to going from Marcia or Cindy to the middle Brady girl that no longer feels special. I think I feel like Jan! It is not a feeling of envy. It is a feeling of being in the middle without a sense of place. I miss all of the invites for free dinners that I used to get (pre-COVID-19) as a newbie. I miss the eagerness that others had to educate me. I miss the sparkliness that came with being newly diagnosed with multiple sclerosis.
But I'm not yet an "MS elder"
At the same time that I miss the extra love that came from being a new MS patient, I am not yet an "MS elder." An MS elder is someone whom I described as having had the chronic illness for a very long time. Of course, the definition of a very long time is a bit open-ended. I know people who have had multiple sclerosis for more than 25 years and many between 10 and 25 years. 25 years is definitely a long time and maybe 15 is. We can agree that 6 years is not a very long time. Somewhere in between is where I am.
We still have many uncertainties
Those of us in the middle section-time since our multiple sclerosis diagnosis occupy a strange section. Many of us have settled into a course of medical treatment. We have become more familiar with our specific symptoms and quirks. Yet, we are not so set that we are not experiencing new problems or having unexpected setbacks. This middle phase is still filled with trepidation. Are we really doing OK on a medication? Should we be looking at new therapies? Are we moving into a new stage? While we are not at the very beginning, we may have the same uncertainties.
I am too old to be new and too new to be old
I have had multiple sclerosis long enough to share my experiences and to be helpful. I have not had it long enough to share some of the deeply wise insights that I have learned from those who are in their second decade of multiple sclerosis. There isn’t even a word for those of us in the middle. We are important members of the multiple sclerosis community. We have a lot to offer, of course. We are simply sandwiched between the two groups who seem to get the most attention paid to them. The newly diagnosed get attention for being new. The multiple sclerosis elders get attention because of their wisdom and long-term experience. When was the last time we got super excited for someone at year 11 of the diagnosis? Yeah, me too.
A nebulous stage
Being the Jan Brady of multiple sclerosis patients is nebulous. We do not really have an MS identity upon which to hang our hats. However, we can take our cue from that fictional middle child character. We can embrace our awkward stage and know that we are as much loved and supported as our younger and older compatriots. And while it does not make up for all of those delicious free meals, it is more than enough.
Do you have a fear of needles and take medication that requires injection?