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Five Years Post Diagnosis – some things to consider

05.10.16

By Dr Sally Shaw

Five years down the track, and the 'novelty' of an MS diagnosis has well and truly worn off.  And to be honest, that can be both a good and bad thing.  It is wonderful to move out of the headspace of horrifying uncertainty that can accompany the first 12 months of diagnosis; to look back on the evidence of the past five years and to be faced with the reality that you did cope, that you managed your MS, and that more often than not, there were fewer catastrophes than you had anticipated.

Conversely, the interest from well intentioned friends and family may have waned and life goes on, while the invisible symptoms such as fatigue are still ever present, but don't get much airtime when the washing still has to be done, work continues, and kids' routines are demanding.  After five years, managing MS (in whatever form you have) has become part of your routine. So at this juncture, there are a few things you might want to consider.
 

Don't blame everything on the MS.

Is your left knee playing up? Do you think it's 'just the MS', and keep on going? This sort of dismissal of aches and pains can be a problem for those diagnosed with a chronic illness.  It is, of course, understandable.  So much time is already spent at the GPs, neurologists and with allied health professionals now that you have a chronic condition.  Why would you want to go to the doctor for something else?  Wonderful, caring, knowledgeable, specialist neurologists are probably all guilty of shrugging their shoulders from time to time when a patient asks them 'could this new weird feeling be my MS?', but unfortunately MS does not protect from other illnesses/conditions or concerns, so it is important to flag new 'things' with your GP whenever you observe them.
 

Don't be complacent re treatments and symptom management.

Your neurologist carefully considered the medications available to you five years ago before prescribing the right one for you.  And that could be the right one for you for another five years, or longer.  However, the now wonderful reality of research into treatments for MS sees a new disease modifying therapy come onto the market much more frequently these days than ever before.  You don't have to spend precious time Googling 'Multiple Sclerosis' to stay abreast of these treatments, but it would be wise to touch base with your neurologist every year or two to discuss options, or at least recent developments in treatment for MS.  To see if you are still on the best drug for you.

Similarly, it is really important to recognise that treatments for symptom management are getting better all the time.  Just because there wasn't an effective treatment for your neuropathic pain (for example) five years ago, doesn't mean there isn't one worthy of trying now.  It could be that a combination of pharmaceutical and psychological pain management strategies are now being offered in a neurological pain management clinic that you are eligible to attend.  Don't continue to put up with symptoms just because they were not effectively treated 3 years ago.  Always mention your MS related symptoms to your neurologist, as he/she may have recently come into contact with a fantastic new treatment, or allied health professional who specialises in treating that exact symptom, and are eager to refer the right people to the right treatment.


Know your key messages

Five years down the track you have figured out who is 'in the know'.  You've told the people you wanted to tell about your diagnosis, and you've dealt with the responses, both supportive, and unhelpful.  After living with MS for five years, there are probably only a handful of 'new' people that you will tell, but when you do, you want to make sure you get it right.  It can be helpful to go into these conversations not knowing the exact wording, but the key messages. Here are some suggestions:

  • 'Some time ago I was diagnosed with MS' - let them know this is not new information that you are dealing with - this could reduce their inclination to gasp in horror!  This message also lets them know you are 'used' to it.
  • 'Everyone with MS is really different' - just because they have heard of someone with MS in a wheelchair, doesn't mean you will be in one next week.
  • 'It's not a secret that I have MS but obviously I don't tell everyone' - this might let them know that you are not asking them to keep a secret, because of course you don't own this information now that you have shared it, but maybe they shouldn't bring it up with every person they meet.
  • 'I'm always happy to answer questions about my MS' - just reinforcing the whole 'don't assume you know about my MS just because you know someone else with MS'.
  • 'I wanted to tell you because...' - giving your new friends a reason you are telling them about you diagnosis is a good idea to help them understand this new information.  You could link it to a symptom 'I felt as though telling you I was really tired, just wasn't giving you all the information, and I wanted you to have a bit more of a background as to why I get really tired sometimes'.  Ultimately, you are probably telling them because you value their friendship.​

It can feel a bit odd telling friends you have had for a while, about a diagnosis that happened years ago.  And you probably don't want to make a huge deal of it.  So following execution of your key messages, make sure you have a change of subject at the ready.  Those around you might not know what to say, may become upset, or might feel uncomfortable changing the topic (how do they follow this news?) so make sure you can do it for them.  Normalise the conversation again.  Have something up your sleeve to engage them in, while sending them a signal that it's ok to talk about themselves.  'So, I've been meaning to ask you how the planning for your extension is going?' Or 'Hey, how did swimming go on the weekend?'.  Give them something you know they will be happy to talk about, that takes the focus off the MS news, so the two of you can get back into a 'normal' conversation again.  It might feel a bit weird, but not as weird as you both might feel if you suddenly end up in silence.

Five years on, MS is probably a little different to what you had expected at diagnosis.  However, don't forget the importance of knowledge, informed decision making, and strategic communication with those around you (health professionals and friends alike).