Here you find yourself sat in front of a consultant, who is explaining to you, that following the results of your MRI scan and or, lumbar puncture they are giving you a diagnosis of multiple sclerosis.
At this time your head will be spinning while you are trying to take it all in, you will want to ask so many questions but not one of them will come out.
You will leave the appointment with promises that your MS Nurse will be touch, to arrange the next steps.
As you walk away, every emotion imaginable will be going through your head, firstly, you will feel numb, even if you had an idea and multiple sclerosis had been discussed previously, this shit just got real.
But, let yourself go through every feeling you have, don’t fight it.
Above all, the one thing I will stress at this point is to stay away from Google, no matter how tempting it is, because no two people with multiple sclerosis have the same symptoms and what is out there will scare you.
Whilst I advise against using google, I would suggest you look to the recognised support groups, which can be found below:
“We’re the MS Society, we’re a community of people living with MS, researchers, fundraisers, campaigners and volunteers.”
“We know together we’re strong enough to stop MS.“
- 9:00 – 17:00 Monday to Friday Support Line
“100 people are diagnosed with multiple sclerosis every week in the UK. That’s one person every two hours.”
“An MS diagnosis can be devastating, for both people with MS and their loved ones. You may feel lost, lonely and uncertain of the future. But you don’t have to deal with it alone.”
“The MS Trust is here for everyone affected by MS, from the moment of diagnosis and throughout your journey. We’re here for you today, tomorrow and every day after, making sure a life with MS isn’t a life defined by MS.”
- Helpline 9:00-17:00 Monday to Friday.
The Society’s mission is:
“People affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever.”
- Support line available Monday to Friday – 9:00 – 19:00 ET
When you type in multiple sclerosis in Facebook search it will come back with international groups first, for me I wanted a UK group, especially when a number of my own queries where around benefits and what treatment is available. So, look for groups in your own country.
MSUK is the group I recommend for UK patients. It is a very well run group that was started by Amelia who though only young herself also has multiple sclerosis.
The files are all full of information and if you can’t find what you are looking for just ask, with over 5000 members there will be a member that can help.
Write in down
Get yourself a notebook and a pen or whatever you use for note-taking, this will prove invaluable because every time you think of something you feel, be that a new or existing symptom, a different emotion, or any questions you want to ask, write it down.
Don’t go anywhere without that notebook as believe me when it comes to your MS Nurse appointment you will be just as tongue-tied as at your consultant appointment.
This will, therefore, ensure you have quality time with your MS Nurse and your consultant at subsequent appointments.
Sharing your diagnosis
If like me you had been ill for some time prior to diagnosis, friends, family and colleagues will have been going through this with you while you were going for tests and to appointments.
Personally, I decided at the start following a diagnosis of CFS/MS to use social media for awareness, as well as starting my blog. Therefore, my friends, family and colleagues all came along on my journey.
So, when I finally received my diagnosis of multiple sclerosis, because, I had been open from the start, I wanted people to know quite quickly, because, rightly or wrongly I had felt like I had been swinging the lead for the previous year and felt guilty every day for not being at work, so, I needed the validation for myself.
However, it’s your choice who you want to share your diagnosis with.
Remember, not everyone can handle your diagnosis, when I became ill my social life almost disappeared and friends, colleagues and even family were empathetic for so long, but not all long term.
So, my suggestion is you shut down, politely, anyone in your circle that you feel can no longer offer you the support you need at this time.
For instance, you will have no end of well-meaning people suggesting you try various different diets, cut out sugar, go gluten-free, exercise more and there is always one that will tell you someone they work with, their friend/sister/brother etc., was cured with cannabis in whatever form they took it.
The most worrying advice out there for me is a book called Overcoming Multiple Sclerosis, this scares me more than all of the above, as there is no known cure and the author is happily sat there making a fortune from sales on the back of its name.
Trying to make sense of it
As my GP said to me, you have just been given a diagnosis of a long-term condition of which there is currently no cure, his advice was to contact Let’s Talk the talking therapies provider for my area.
After I got in touch with Let’s Talk I received an assessment appointment within a couple of weeks. In my area, you can refer yourself you don’t require a referral from a medical professional.
This does vary by area because since I have moved my local area here offers IESO Digital Health online CBT therapy.
At the assessment, the therapist deduced I wasn’t depressed, but she did offer me an anxiety group for 6 weeks, this was in a group scenario with a coach present.
I wasn’t ready to share my thoughts with a room full of strangers, therefore, I took the option of paying for 6 sessions with A New Beginning.
Having completed a very detailed application form and also had a discussion with the lead therapist, I was matched with a life coach.
The life coach was just what I needed and not only did she help me make sense of what I was dealing with, she also made me see some people in my life were no longer serving me; therefore I had to let go.
Remember, you have multiple sclerosis, but it doesn’t have you. You will have good days and you will have days when you don’t think you can go on, but you will tough it out and see it through as I do.
Embrace the strength you never knew you had, because Trust me – it’s there and you will find it.
You can read about my diagnosis here.
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