I wish I could say that the first 10 years is the hardest. I mean it is… but the next 10 years is hard for different reasons…
The first 10 years I called the “Please someone make it stop!!” years.
That’s the time in which the symptoms, which might have been piling up for years, have finally caused your life to crash and burn! Its the metaphorical ‘plane crash!” The strewn out damage as you sift through the wreckage in the wake of the crash, in search of answers, survivors and the ‘black box’ with all the answers for ‘what the f*&^ happened!”
My personal experience is that it took many, many expert accounts, advice, tests, examinations, opinions, suffering, mourning, crying, fighting, disbelief, self doubt, self blaming and so on…
Then comes some diagnosis and some meds…
Then comes some the online support groups…
Then comes the online friendships which slowly take the place of the jobs, holidays, events, outings, social life, former friendships, family, hobbies and interests that were WHO YOU WERE for most of your life. They can be fraught with happy, uplifting moments as well as challenging with competitive, disapproving, “I-did-this-and-so-should-you” behaviour, it can be a life saver as well as a heart ache as you sift through the people who you may or may not have made a connection with.
PLEASE NOTE: NOT EVERYONE WHO IS SICK WILL BE/ OR SHOULD BE YOUR NEW BEST FRIEND OR MENTOR. YOU STILL MAY DIFFER IN YOUR EXPERIENCES, NATURE, DISEASE PROGRESSION, REACTIONS, SUPPORT NETWORKS ETC… NO TWO PEOPLE ARE EVER THE SAME!! Often the sick and chronically Ill can, and will forget that. We are open wounds and emotionally raw from the pain and suffering we are all going through!
By year 10 you have heard all the “try and be all you can be…!” and “Stay positive…” advice (from various people AND doctors)
You have had almost every part of your body probed, examined, tested, scanned, and prodded AT least a thousand time and the idea of complete strangers seeing anything and everything they want, doesn’t even raise an eyebrow anymore. YOU HAVE NO HUMILITY anymore. Your body is simply here for being studied and monitored.
You may still bore yourself and others with tales of WHO YOU WERE… Which is dangerous ground to tread as “…there be monsters hidden there…” and you could be consumed by a very visceral reaction to the memory of the former you.
You have rearranged your life into 1. B.D. (Before Disease) and 2. A.D. (After Disease). No other time scale exists anymore. AND. Most importantly. You can’t go back!! Events and people just fit into those categories now.
You are probably at a point now when you can’t remember a time when something didn’t hurt, not work properly or ache. Pain is a constant. It is a living, tangible thing. You are wedded to it every day no matter how many meds you take, or how many inspirational books you read.
You find life is a constant churn of friendships, doctors and meds coming and going…
You may no longer watch TV, magazines, newspapers or politics as they don’t seem to connect to you or relate to your life and its struggles.
You probably know your local pharmacist better than you know your parents or children.
You are probably thinking ‘should I keep telling people how I really am or do I just ‘retire’ from the world and go manage myself, alone and without the scrutiny and judgement of the world… Many seasoned sufferers do! And I don’t blame them one little bit! Its hard finding things to talk about that the rest of the world finds interesting or worthy for consumption. So the lure to go away and hide in a corner is so, so enticing!
You probably have more pets than human friends.
You are probably trying to think very carefully about what the future can look like and what you want to, or can do, with those years. Do you spend your life savings on a world trip before you cant see/walk/move or enjoy it anymore? Do you sell up and move to the woods and go “off the grid” since there seems very little holding you to this world, unless you feel that your duty to friends and family might keep you in that endless ‘limbo’ and geography.
I am now at the point where I choose carefully who I tell my health story to and share my history with. I really, truly, absolutely don’t want to talk about it anymore! I avoid telling friends. I don’t answer emails. I don’t return calls or questions about “so, how are you feeling?!”… I prefer to listen not talk. There is nothing that I can tell anyone (sick or well) that I can enjoy relaying or telling. I don’t feel unburdened by listing all my meds, doctors appointments, scans or symptoms! NOT AT ALL. I just find it makes me tired and drains me of energy!! … So I listen… And I write a bit, from time to time.
Why do I write it all down? Because about 1 year ago I wanted to do something about the plight of so many of us. I wanted to do more than just sit in support groups and tell strangers how hard this is… I wanted to invite the rest of the world in for a glimpse of what their mother, brother, sister, father, cousin, friend or spouse might be going through and feeling. [They] can no longer say “I really didn’t know!?” because its all here. The truth, the whole truth and nothing BUT the truth… if you really care enough to look.
Answers? I don’t really have any. Advice? Probably just TWO things I can share that MIGHT be helpful.
- Against all the odds and efforts of the world, please, please don’t lose faith in yourself and your inner voice. The voice that may be so silent now that it takes enormous concentration to hear it… but don’t let that voice go. Don’t ignore it. Don’t doubt it or mistrust it. It is the last remaining embers of YOU buried under the rubble. It is reminding you WHAT YOU want and WHO you are. It is reminding us that we are still valid and haven’t been eroded away completely.
- Remember its YOUR life. No one else’s! Millions of people will tell you how to live, what to do and what to say… but you only have one life to live, so you might as well live it your way. How people respond to that… Well… that’s their issue really, isn’t it!? They probably wouldn’t want you telling them how THEY can live and what they should do.
Well that about sums up the first decade for me. And I won’t pretend to speak for all of you, but I assume you might connect with one or two of these things.
I am often reminded that life IS HARD. If we ever believed otherwise, than we have been forever awoken to the painful truth.
The first 10 years have been dotted with many, many, many battles, losses, failures, broken hearts, broken dreams and falls. I have been down some very dark and pointless dead ends. I have lost a lot of friends, family and I have had my ego, personality, self belief and identity completely overhauled. But sometimes I look at this past decade like a farmer looking at destroyed crops, laid wasted and rotting in the field. And as I walk around this new landscape I find tiny little buds of new growth, sprouting up from all the devastation and I cant help but smile a deep and grateful smile… Life may still go on!