September 8, 2016

peace sign

Whatever your diagnosis, it is yours and yours alone. But that doesnt mean you have to fight it alone. Family, friends, support groups and organisations are there just wanting to support you.

Unfortunately, you are not the first to be diagnosed, and wont be the last.  

If you are ready to reach out, then you need to know:

  • who to tell
  • how to tell
  • who knows more - organisations
  • who will be there at 2am to give you support

Who to tell

This will depend on your symptoms, your progression and sometimes your local legislation and insurance issues.  Think about your driver’s licence and whether you need to notify your motor registry.  What about health insurance?  Life insurance?  Car insurance?  

When it comes to work, again there may be legal or occupational health and safety issues.  These will differ based on whether you are office based, use your cogitative or fine motor skills, or the level of fatigue you experience and the physicality of your profession. If in doubt, seek your own legal advice or that of your human resource team.

Personally, I needed time to get my head around being diagnosed and what it meant for me before I could announce it to the world.  Obviously my husband.  I told someone I thought was a close friend.  She told me she would be there for me and we would fight it together.  That was three years ago.  I guess she is looking for her sword :-( 

So, I felt alone.  People became like an onion.  And I began to categorise them as onion rings.  The closer to the centre, the more likely I was and still am to tell you.  Now I have a rule.  If I were relapsing, would you be ‘on my team’, either helping me, or my family?  

How to tell

No-one is expecting you to tell them you have MS.  Unless they have been through the diagnosis journey with you.  So, be gentle with them.  They will have their own reaction - their own ‘denial’ - but you’re too young - but you dont look sick.  Their own way of trying to relate - my mother’s cousin/best friend’s sister/friend at work had it too.  

So, unless you are naturally patient, wait until you are ready to tell.  Oh, and people do get pissed off if others find out first!  I told one cousin - who then wanted me to hold off telling her parents or brother because her father had just been diagnosed with cancer.  It took a year or so before I told her brother.  Even though he understood I didnt want to lay my stuff on him, it didnt stop him from getting pissy.

Who knows more - organisations

All the companies that have disease modifying drugs have a heap of information about multiple sclerosis - and of course their drugs.  

Most countries have a local ‘Multiple Sclerosis society’.  Whether it is focused on research, fund raising or supporting patients, there should be one near you.  They will also put you in touch with local resources and support groups.  

Who will be there at 2am?

If you are like me, I dont have questions or ‘stupid thoughts’ during the day.  It is at 2am when I can’t sleep.  Luckily, through the magic of social media, there is always someone awake somewhere in the world.

If you follow me on Twitter @urMadeStrong, check out the other tweeps I follow and you will find a heap of fellow MS travellers.  You’ll also find some of the organisations (like OMS and Wahls) with a strong Twitter presence and ready to answer queries.

Facebook.  What did we do without Facebook.  There are a heap of public pages, but if you want to just chat among friends that share the same stupid disease, then I thoroughly recommend you reach out and join.  Our fellow travellers have seen or experienced it all before, are a wealth of knowledge and advice.