Many people are embarrassed to have Lyme disease. You may be thinking, “They can’t help it, that’s crazy!” Well, that’s just the thing. People with Lyme are called crazy by so many friends, family, and doctors throughout their Lyme journeys that they don’t exactly jump at the idea of the possibility of having even more people call them crazy. Insurance is another reason. They are afraid that if their insurance find out their medicine and the other few treatments that insurance pays for are for Lyme, then insurance will quit paying for them. That fear is validated by the stone cold fact that the CDC has denied the existence of Chronic Lyme disease, meaning insurance will not cover medical expenses for medical help that for many people is literally lifesaving. Lyme people not wanting the insurance agencies to find out they have Lyme is not because they are trying to mess with the insurance companies; rather, it is because they are being denied the right to a healthy life because of the IDSA and CDC guidelines. What would you do? What would you tell a debilitated person in this situation to do? In either circumstance, would the decision be to just waste away and die, simply because the decision of the IDSA and CDC is to refuse to help?
What are the consequences of the fact that people are embarrassed to have Lyme?
Easy. This means that the patients who are embarrassed to have Lyme will not stand up for themselves, at least in a way that is big enough to change things. With only a select group exposing their stories of Lyme disease to the media it will be more a difficult, and longer process before any significant change is made –if there is one made at all. How you can help (because who wouldn't want to help?...) Allow me to answer this in a manner that is simple enough for a toddler to grasp.
1. If you know someone with Lyme, offer them support and encourage them to speak up and not to be afraid; or embarrassed of what they cannot change.
2. If you have Lyme, speak up for yourself despite the fear of persecution because if all Lyme people do not equally use their voices to the best of their abilities, then there is the possibility that more people will feel the same pain you feel, than there would have been if you used your voice. Also, in doing so, you will encourage others to take a stand for their disease.
3. If you do not know anyone with Lyme, research it more, and tell everyone you can about what you read. A simple Facebook status can do wonders in itself.
4. If you are a doctor, look at your patients as human beings not numbers –not just a number out of all the patients you see each day, and definitely not just a number in regards to dollar signs. Really, if you take those two things away, that alone is powerful enough to create a major, positive movement in healthcare for a patient of any kind.
5. If you are in the CDC or IDSA, you can help in much of the same way. DON’T view people as numbers –not just the millions of extra dollars that are made when you fail to expose the whole truth, which in many definitions is called a ‘lie’, or the number of people that will benefit from you doing so. For you, the only number that should be worrisome care about is the number of people you can help. 6. Regardless of what, if any, role you play in the topic of Lyme disease, please leave judgment out of this. There are already enough factors involved.