Thanks to something I read on line early this morning I have been left thinking back to when I got my diagnosis and what I could say to someone who has completed the first stage of any invisible illness, being believed and going through the battery of tests. At that point, it feels as though you have a million friends as everyone who knows you, even if it is just because you pass them in the corridor at work, all seem to care, all offered a friendly hand and tone of concern, or at the very least a sympathetic smile. Those first months are like nothing I had experienced since the death of my son, the way I felt and the way people were around me, was just the same. Some avoided me as they didn’t know what to say, others through their arms around me, though I hardly knew them at all and inside I was a mess. I can’t tell you how long that all lasted and just like grief, as that is what you are doing, grieving for the life you think you have lost. It slowly changes and slowly you come back to being yourself, just as slowly you also start to realise you haven’t lost your future, it has just changed.
It is natural that as soon as you have the name the definition of what is wrong that you will dive into finding out the worst and the best of what is happening. At this point I would recommend not to make changes that are not needed right away. Let yourself settle and be clear what is wrong and what may happen, remember those words “may happen”, worst case scenarios will always be in your mind but they are that, the worst case scenario not what is guaranteed to happen, nothing is 100%. You don’t need to make life changing decisions on day one, there is time and you need it to be sure of what is really happening in your body. I don’t like or believe in fighting it, my life has shown me that what you fight often has a habit of fighting back, I recommend the pacifist role with this one. Get to know your illness, not the one on the computer screen or in a book, but your illness, the one that is personally living with you. Get to know what upsets it, what makes things easier and what allows you to live well. This is the closest and most personal relationship you will ever have and as such it demands respect, treat it badly and it will treat you badly.
How each of us handle these things will be different, but for me I decided to be upfront with everyone, my illness was visible by that point as I walked as though I was drunk at times and my speech often backed that up so sending an email out round the company telling them all I had MS and that at times I may appear drunk but I’m not and if I fell over a helping hand to find my feet would be appreciated. New staff I had to manage were told at induction and other than that life appeared normal, to those I worked with and still had at that point as friends. Openness is my way of living so to me it wasn’t a difficult thing to do, some I know want to keep these thing private, but I see it from this point of view. People judge you all the time, a slurred word or wobble is enough to start whispers, so if your illness is visible in any way, I would recommend that you tell everyone you are in constant contact with, you have enough to handle without gossip and it’s twisted results.
Those three paragraphs will I guess took for me about 6 months of real time to work through and to be settled with, from that point on, well it depends on your illness. The answers to some questions you might have are probably through out my blog, but I hadn’t before compacted my advise to the newly diagnosed. All of us react differently to the same situations and I would stress more than anything else, your life isn’t over yet, it’s only over the day they put you in your coffin and you still have a life to live, so live it to the full, more than anything, be happy and find as many ways to be happy as you can. Everything in life is easier to handle when you remember to smile.