So you feel unwell, you visit your GP who decides to refer you to specialists to help turn your symptoms into a diagnosis. However, like myself, those with chronic or rare diseases will be made aware – this may not mean a cure. Before being diagnosed with such conditions I like most people would have assumed that medicine could heal and ultimately cure me. Unfortunately in my circumstances management is “what we are striving for.”
For instance, my hereditary bleeding disorders, one being Von Willebrand disease means my blood fails to clot at a normal rate resulting in excessive and prolonged bleeding, and my connective tissue disease, or SLE/lupus to the majority, are both not only notoriously hard to diagnose but even harder to manage.
My journey to diagnosis has taken many years, and many tests, investigations, discussions, departments, and differential diagnoses before reaching the current labeled stage.
Through my journey to finally receiving a label to encompass my life-altering symptoms, I had assumed once I was correctly categorized I would be offered a cure.
Even with the knowledge that these conditions were lifelong, I never assumed that my main treatment plan would be management of symptoms as opposed to fixing my failing body. That is not to say the symptoms are not the most bothersome aspect to deal with but being told that the best I could hope for was extended gaps between “flares” or lessening the impact of conditions on my day to day would be the only goal.
Through visiting blogs and forums I have discovered so many people living with chronic illnesses also spend months or like me years waiting for diagnosis and even more time trialling treatments to bring respite.
The toll physically and emotionally is huge.
My ailments have taken control of nearly every aspect of my life, from relationships, to working (I had to leave my career due to ill health), socializing, and even down to what I wear. The thought that there is no cure for my conditions is one of the hardest parts to digest.
My diagnosed bleeding disorder and gynecological issues means to date over a four year heavy and disabling “period,” resulting in severe anaemia, pain, nausea, vomiting, and a very unhealthy consumption of sanitary pads. My connective tissue disease means daily aches, pain, fatigue, depression, anxiety and rashes.
My medication means constant new side effects, daily planning and constantly checking that I do not rattle when I walk — I’m fairly certain I do.
Those close to me are on the whole supportive, but some have gotten bored and resentful of the fact I’m “not better yet.” Surely now I have been labeled I can be fixed and “normal” again. (I personally do not feel I’m abnormal, but this phrase has been said to me roughly 10,474,629,273 times in the past few years). My life has become unrecognizable from the one I had established before my problems become something unable to be ignored or played down.
Unlike when you have the flu or a stomach bug which in time or with medication is cured, people find it very hard to digest the fact that chronic conditions are often just masked, and therefore despite improvement or good periods are still just lurking just below the surface.
I recently tried to explain this distinction to a friend who unfortunately failed to grasp the concept, and rather unhelpfully accused me of making excuses. This hurt a great deal as when even people that are supposed to love you can not accept the fact a cure isn’t available – how can we expect to ourselves while living it, daily, hourly and by the second.
Unfortunately the reaction is a common one, I’ve seen and heard and lived through so many similar exchanges throughout my journey. Through communities such as “The Mighty” and other social media all telling the stories of those with chronic health issues and highlighting the daily impact thereof – I hope one day greater awareness and compassion will be extended to all like myself.
Until then please remember:
You are truly doing the best you can.
Don’t feel ashamed if others cannot understand your journey, or choose to exit your life because they cannot deal with it. This is not a failing on your part, it says more about them than you.
Your conditions are not who you are, they deserve and demand respect but you are so much more than your diagnosis.
I wish that your management helps you find respite.
I hope that continued awareness will mean those who cannot be cured in the conventional sense will receive greater support in maintaining a functional life.
I hope that each of our journeys can be one that may offer support to another.
Finally, please know that we are all unique and rare and should in some way find a way to make peace with our diagnoses and not feel guilt or despair at the lack of a cure. Whether I will ever get there – who knows, but I’m going to give it my best shot.
If you want to know more about the conditions mentioned above please visit these websites: Molly’s Fund and National Hemophilia Foundation.
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Thinkstock photo by Everste