Learning to Cope With Diagnosis

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Posted By Scott

The website Shift.MS recently asked for people’s experience of diagnosis.  Being diagnosed with MS came as a shock.  It probably does to everyone.  There is no guidebook on how to cope with such a life changing diagnosis but everyone who goes through it has something to add.

Coping With Diagnosis

A tweet from Shift.MS directed me to an excellent guest blog by Heather, who has the tremendous Twitter handle of DizzyTheDonkey.   In the blog, Heather documented seven ways to deal with diagnosis.  I agree with all of Heather’s and I’d recommend you check out her blog at dinosaursdonkeysandms.com

In a similar vein, here are the lessons I have learned so far.

1. Talk to people

This is one of Heather’s and I can’t emphasise it enough.  Speak to friends and family.  Over the last two years, I found out who are my real friends.  People that you can talk with, off load to.  Those people will be there for you regardless of your condition. 

Despite this support, I really struggled over the first six months.  My mood was up and down.  And then down a bit further.  I fell into, if not depression, then something close.  I spoke to my GP for advice and she arranged for me to get some counselling and prescribed a short course of antidepressants.

The thought of antidepressants scared me.  I didn’t want to get hooked on them, but my GP assured me that they would monitor the usage and effects.  They would tide me over until counselling and help smooth out some of those highs and lows. 

Counselling lasted for three months.  It helped to bring me back to a more level head and gradually I was able to step back and look at the condition without feeling the panic.  A counsellor doesn’t judge you, listens to you and can provide some valuable guidance.  It helped me tremendously.

Talking to my MS nurse, Pauline, has also been a huge help.  Pauline has answered so many questions from me over the last two years and helped me understand what’s going on.  I remember my first meeting with her in November 2018 where I spent an hour brain dumping about how terrified I was.  Since then she has been my contact point into the NHS and MS care.  Your MS nurse is there to help, don’t be afraid to talk to them.

2. Don’t over-analyse

Guilty!   I struggled to understand what happened.  How did I suddenly get this disease?  One day I was fit, healthy and looking forward to a new job.  The next day, I was in hospital unsure of what the future now held.  This sort of thing only happens to unhealthy people doesn’t it?

Well no, it can happen to anyone.  It took me a while to realise this.  As I had a definite date where things changed, I found myself trying to work out why I happened.  I went back to that date over and over again, trying to determine what I could have done differently.  When I couldn’t come up a good answer, it damaged my mood.  When I was able to put that line of enquiry behind me, I found that it was easier to maintain a degree of positivity.

3. Don’t beat yourself up, be kind instead

Join a martial arts club and they’ll beat you up instead.  Seriously though, don’t feel guilty about having MS.  It’s not your fault.  There may be things you could do before that you can no longer do but don’t torture yourself thinking about it.  Try to focus on the positives of what you can do now.

There might be meltdowns and that’s ok.  Following diagnosis, I was on an emotional rollercoaster with a lot of tears, panic and worry but engaging with my GP and counsellor as mentioned earlier saw things settle down…eventually. 

Be kind to yourself and do things that you enjoy.  Getting back to running and martial arts have been two of the key things in helping me deal with MS.   

4. Learn What You Can

This is another from Heather’s list.  I didn’t know much about MS when I was diagnosed.  The wife of a friend has MS and in the 20 years I have known them she generally seems to keep well. 

It is useful to understand what MS is and, equally important, what it is not.  I like to deal with facts and the unpredictability of MS plays havoc with that.  There was a point where I needed to accept this unpredictability and not focus on that “what-about-ism” of things that could happen.  I told myself that I did not want to find myself turning 70, having worried for years about a disability that never came.

Researching MS is helpful.  There is a lot of good information from the MS Society, MS Trust and many others.  However…

5. Take your time

Being diagnosed with MS is a major life changer.  In trying to find out more, I read and saw a lot of things that in the early days I wasn’t ready to see.  Images of wheelchairs, unable to walk, fatigue, unable to work and so on. 

Having hobbies that are so focussed on physical activities, I could not handle these.  There was a feeling of hopelessness, that I would never again be able to do the things I enjoy.  Whilst this train of thought might not have been warranted, it was all consuming.  MS was on my mind from the moment I woke up to the moment I went to sleep.

As I gradually came to terms with MS, assisted by medical treatment, counselling and support, eventually I found that it wasn’t dominating my every waking thought.  Similarly, I could start to learn about the condition and see images without it sending me back into a depression. 

Don’t feel the need to accept it within days.  Take it at a pace comfortable to you and engage with MS resources as and when you feel ready.

What works for you?

At the end of the day, an coping with MS diagnosis is a huge challenge.  It’s a life changing event, something that will take a while to come to terms with regardless of the starting point. 

These steps have worked for me and I’d be interested to know how others have dealt with diagnosis.  What would you suggest others do?  What should they avoid?  Let me know in the comments box below.  Stay positive, we can do this.

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