Hi lovely folks! 👋 Soon be October and Lupus Awareness Month. How about a plan?
The following was not written by me (if only I could write so
eloquently and without profanities! 🤬...): a fellow warrior in the fight against ignorance sent me it, with permission to post.
If everyone sent it to just one doctor, that could be 20,000 better-informed medics! 😁😁😁
Be well! xxx
A message to the medical profession
To the Drs who listen and believe us
Some of us search for answers and help for many years, trapped and powerless in the diagnostic wilderness, our brains and bodies weakened by the disease, waiting for understanding and validation of our suffering.
If you have been the Dr who has held our hands as we cry in relief at finally being given a diagnosis that no one would want but that provides an explanation as to why our lives have changed so much. If you have been the Dr who has listened to us with empathy and compassion. If you’ve been the Dr who has given us the safety and security of knowing that there is someone now on our side. If you’ve been the Dr who listened to us, who believes us and helps us lead the best life we can.
If this is you, please know that our depth of gratitude is immense. You are true heroes, you have not just saved lives but also allowed many of us to live with hope again. Hope that we can lead more normal lives, contribute to society, be the mothers, fathers, daughters, sons and friends we so desperately want to be. Hope that even on the darkest of days, when life is a black net of pain, fatigue and confusion, that there is someone walking with us through the darkness who has the strength and knowledge to guide us.
To the Drs who don’t
We do not expect you to know everything about such a challenging varied disease. Please learn with us, try not to be insulted or intimidated by the depth of knowledge only specialists in our disease and the people fighting this disease have unwillingly gained. Work with us, combine it with your intelligence and great breadth of general medical or specialist knowledge and stand with us in our battle.
Please remember that although most of you will not fully understand our disease, that you put us in grave danger if your lack of understanding leads you to deny its existence. For those of you that make us feel that it’s all in our head, or we are overly health anxious or hypochondriacs because you do not know enough about the disease that is attacking so many parts of us, please think very carefully because you damage our chance of a better life, sometimes our chance of survival.
It is not just the lack of medical help, medication and support that damages us but your denial of something so overwhelming and brutal in our lives, distresses, depresses, damages and demoralises us so deeply that our ability to fight another day is much reduced. The disease takes so much from us; please don’t also take away our self-esteem and belief in ourselves as you do when you refuse to validate our suffering. We are not imaging our symptoms; they are as real as other diseases just less visible to those who do not understand our disease. It scares and upsets us greatly that we know through our own experience and that of so many others with lupus, that the people we must turn to for help can be more of a danger to us and inflict deeper wounds than our disease.
Please understand that we will be greatly strengthened just by your presence, compassion and most importantly, belief and support in the battle we will be facing for the rest of our lives. We don’t have the strength left to fight you too; we need to trust you and know that you are on our side.
