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Lines in the sand

1 November 2016

Some lines in the sand are like solid stone walls that will never shift.  Others are more like children’s sand-drawings that will wash gently away with the next incoming tide. Some of mine have started out immovable, only to erode and change over time.

I drew a line that I once thought would be permanent soon after I was diagnosed with MS.  I’d discussed the news with a few people I wanted to keep in the loop (immediate family and selected friends) and a smaller number who I felt I needed to have aware of my situation (my PhD supervisor, a senior colleague I consider a mentor at work, a nurse I work closely with and who I trust to tell me if she ever thinks I’m not doing my job well). But that was it.  I mostly kept the fact of my MS very private for quite some time. 

Mentally I created a line in the sand at five years, telling myself “When I’ve had MS for five years, I will have a better idea of how it is likely to affect me.  At that point I’ll be comfortable to be open with most people.”

Some of that thought process makes a lot of sense: I had no idea what sort of trajectory my MS might take early on, and there’s no question it is easier to discuss it now that I am able to share how it has (and has not) affected me over many years.  But I’m not sure why I ever thought disclosure would magically become easy after exactly five years!  When I think back to five-years-and-one-day of knowing I had MS, I remained mostly private about my diagnosis, which still felt very new in many ways.  I’d told a few more people.  I’d learned a lot more about MS and what it meant to me.  But I was nowhere near the state of adjustment I’d expected to reach by that time; five years of tides washing in and out had blurred what I though was a clear line considerably.  Even at ten years, although I was closer, I hadn’t reach the state of comfortable openness I once thought five years would bring!

2017 will mark 15 years of living with MS for me.  I haven’t decided yet whether I’ll celebrate that “achievement” in any particular way.  It looks as if I’ll get there in a state I’m pretty content with: still working, albeit part time, with good mobility and cognitively intact (so far as I’m aware!).  The middle-aged creep of long sightedness has definitely made the impact of my subtle vision changes worse, but I’m finding ways of dealing with that.  The level of fatigue I live with is worse, too, despite the various strategies I’ve adopted for managing that one.  I know I couldn’t manage full time work at this point, but I’ve come to appreciate the advantages of part time work and a simpler life style.  Symptoms aside, I’ve learned to accept adjusting to life with MS as a process of constant evolution rather than a destination.  My level of openness about my diagnosis is similarly something that changes gradually, according to my needs and the situation.

Whatever your view is on being open about your MS, disclosing is not always easy.   This is true whether MS is something you’re completely comfortable to share with everyone you know, or whether it’s something you consider more private.  It’s true regardless of whether or not it’s visibly apparent that you have something going on.  No matter what your personal situation, if you’ve been diagnosed with MS, I’d recommend reading a blog post on the MS Australia website by Dr Sally Shaw called Five years post diagnosis – things to consider”, particularly if you’ve been living with MS for some time.  Dr Shaw’s tips on how to discuss your MS with the person you’ve known for a while but to whom you have not previously disclosed are especially helpful.  As I read those, I felt as if she were writing just for me! 

Whether you’re slow, like me, to reach a time where you’re starting to be comfortable with talking about your MS, or whether you were open from day one, I think Dr Shaw’s blog is worth a look.  Regardless of whether it’s been five months or fifty years, I suspect there’s something in there that could be relevant to you!


The Unaffected One



Comments (2)

A really interesting post TUO. I just hit my 3 year 'anniversary' (roughly, as I realised I've forgotten the exact date already!) and I haven't disclosed my MS to anyone new (friends or family) new since those first 6 months. Like you, things are 'So far, so good' in my world too, although the only consideration I have about mostly staying in the MS Closet, is that it limits the advocacy and fundraising I can do. I'm such an advocate within the GLBTI community, and some days I wish I could have that same role in the MS Community. In saying that, blogging is a good way to reach out to some in the MS community, while also staying anonymous. Thanks for a great post! Sam

Thanks Sam! I'm so glad I'm not the only one who doesn't remember the actual date of their diagnosis! I know what year it was, but I completely forget the day! What you say about advocacy also mirrors my own feelings. I would really like to be totally "out" about my MS for advocacy reasons, and I have to keep reminding myself of two things. Firstly, a chronic illness diagnosis does not bring with it a "responsibility" to stand up and be counted as someone who lives with that illness. Much as I admire those who choose this path, it is OK to walk a different one if we've decide that's best for us (or some of those we care about) at this stage. And secondly, it is entirely possible to be a good advocate without announcing your own diagnosis to the world. I'm guessing you are the first to speak up about invisible disabilities if you hear people questioning whether someone should be using that disabled parking space or sitting in that special needs seat! Don't underestimate the very real impact you are having in the community, even without disclosing more about yourself than you are ready to at this point. TUO