"If you could go back and speak to yourself on your diagnosis day, what would you say?" The 'Dear diagnosis' blogathon, is Julie Flygare's lastest project, inviting people to write a letter to our ourselves on our diagnosis day. Here's mine...
Congratulations, you finally got your diagnosis!! After years of not knowing what was wrong, it's good to be officially told that you're not crazy or lazy, isn't it?! Enjoy the relief that accompanies this label, as the journey ahead is going to be tough. You probably don't realise it at the moment, but your symptoms are going to affect most areas of your life and impose restrictions you've never had to consider before. Effective treatment is going to be difficult to find and after a few years you will go on to develop symptoms that will make life all the more painful and complicated, whilst rendering you unfit to work or drive. These things can't be changed, however how you decide to view them can be and make all the difference. You're at a crossroads point and the direction you now take will determine how you feel about your condition, your limitations and ultimately yourself as a person.
One route leads to Downtown Denial and the darker area of Depression. Here you'll try to convince yourself and others that your symptoms don't really affect you or interfere with your life. However what begins as denial, soon becomes depression. The responsibilities that come with being a mother, a wife and an employee with a stressful job, will take its toll and you'll soon be very aware that you're struggling to juggle everything in comparison to others. I know you remember, your response is easy to predict. You'll feel a failure for not meeting the expectations you have placed upon yourself - not being the person, the parent, the wife you wanted to be. Stubbornly, you won't want anyone to know that you're having a difficult time. Instead of admitting to others that your situation, abilities and how you feel about yourself have changed, you'll choose to silently suffer; pretending to the world that everything is under control. You'll maintain this silence in vain attempts to avoid burdening others with your darkness and consequently never feel that you can be truly honest with even those closest to you. But ask yourself...who will you talk to when things become tough? Who will you share your troubles with when the inevitable black cloud sits heavy upon your shoulders? When you wonder what the point is when you work so hard, yet achieve so little? Because these thoughts will come and the darkness will deepen, until you reach a critical point where you will ask yourself one very important question...'Are the people you care about better off without you in their lives?'. This is your rock bottom. You'll recover, but unfortunately still fail to learn that its better to be honest.
Please, please know that hiding your symptoms, your limitations, your difficulties will only result in shame and breed a fear of judgement that will keep you imprisoned for years. No matter how hard you'll try to add positiveness into your life, it will always be outweighed by your secret. Narcolepsy will determine how much time/ energy you will have spare and if you're not being honest about this with others, then success will always be just out of reach. I led this lonely life for 12 years, but you don't have to. There's another way.
I urge you to head towards Tolerance Terrace and be honest with both yourself and others from the outset. You'll find most people care enough to accept you as you are. Those who don't and become judgemental don't deserve your limited time and energy, a place in your life.
Read as much as you can about the condition, for education leads to understanding which will help you to establish better ways to manage your symptoms daily. Education will also help build your confidence serving you well when having to challenge inappropriate health care, something that I'm afraid you will encounter. In your quest for greater understanding, you'll meet others with the same condition, the same concerns and the same difficulties. There is much comfort to be found in talking to others who you can truly relate to and these chance encounters will lead to firm, life-long, close friendships that you will greatly cherish. Mutual support will become part of your everyday life and you'll never feel that you are suffering alone again.
The frustrations of leading of what will often feel like a grey life in comparison to others HD multi-colour, will never entirely go away, but you will gain a deeper appreciation of time and prioritise your limited supply upon the things that mean the most to you. You, your family and everyone you care about will benefit from this and life will feel a little more balanced. You'll find new ways to utilise redundant skills and be able to help others avoid the Downtown Depression route. There'll be much satisfaction in supporting other people with the condition and you'll soon learn that you have a voice that others take comfort in hearing and opinions that are shared. Your self-worth and self-confidence will grow and you will become the person you originally wanted to be, just in a slightly different way.
Be kind to yourself, respect your limitations, trust your instincts and be proud of the person you are. These rules alone will serve you well on your journey and who knows, my advice may eventually help you reach Acceptance Avenue. Enjoy and value life, find beauty and appreciation wherever you can; after all this is what life is for.