Reports show there are over 300,000 Americans diagnosed with Lyme disease each year. That means there are over 300,000 people wondering when and how to tell family, friends, employers and others they have Lyme disease.
Factor in the people who have Lyme but are misdiagnosed, with those people who have not sought a diagnosis yet, and it becomes obvious Lyme disease is an epidemic.
With this epidemic comes a stigma, an unwarranted stigma, that makes people feel insecure when it comes to revealing their diagnosis.
With Lyme being the fastest growing infectious bacterial disease in the U.S., it’s time we start figuring out how to break down barriers, remove stigmas, and be comfortable bringing awareness to this issue.
Disclosing your Lyme disease diagnosis needs to happen. Depending on the person you are entrusting with this information, when and how you deliver the message can vary. Keep reading for tips to help you move forward with your disclosures.
This may sound odd but receiving a diagnosis of Lyme disease can be devastating to some. This can lead to denial, or people refusing to accept their disease. So, the first person who needs to truly understand you have Lyme disease is you.
Once you accept you have Lyme disease, it’s important you educate yourself about Lyme Disease. Knowing everything you can about Lyme will help you explain the disorder when disclosing it to others. Everyone you tell will have many questions. You need to have the answers.
Learn everything from how Lyme is transmitted to specific facts. For example, the Center for Disease Control is not up to date on treatment methods for Lyme. It’s like they don’t recognize it as important as other diseases.
They do not recognize Lyme can debilitate you. Other facts about Lyme include less than 26% of people see the tick that bites them; less than 50% remember seeing a rash; those with chronic symptoms are usually physically or mentally hindered for up to 19 days out of each month.
Most doctors do not use the correct blood tests for Lyme which prolongs accurate diagnoses. Furthermore, Lyme feeds off glucose or sugar to grow and thrive, there is no antibiotic that has proven to cure all Lyme, and mosquitos, mites and fleas can also carry and transmit Lyme to humans.
The more you know, the more confident you will be when telling others.
Telling Family and Friends
Think of all the family members you want to know you have Lyme disease. You may want to tell each one separately, or you may want to tell them as a group. Each family member will react differently. Some will stay silent out of shock; others will want to hug you. There may be some family members that respond inappropriately.
Pre-planning when and how you tell family is key. You want to pick a place that is private and makes you feel comfortable. You also want a place that lets you take your time answering the questions they will have.
Furthermore, how you tell them needs to include the facts about Lyme, the treatment option you are choosing, and what you need from each of your family members. It’s okay to ask for help. Be specific in telling what you need, and then allow them to help.
You may want some family members to attend doctor appointments and support groups with you to help them gain insight into how Lyme is affecting your life.
If you are working, your employer will need to know you have Lyme disease. But you can choose when to tell them. You are likely worried your employer will instantly think you can’t handle the job, or that you are going to be missing a lot of work.
Some employers may react this way, but it is up to you to educate them when the time is right.
When you tell your supervisor, do it in a private space where your confidentiality is protected. Be prepared with information on the treatments you will receive and if those will interfere with work.
You may even want to meet with human resource professionals who can explain the company’s policies and insurance benefits that apply to someone with Lyme disease. Try to have answers to the questions your employer will ask before you schedule the meeting.
Telling Those You Date
Having Lyme disease does not mean you can’t do all the normal things other people do, like date and fall in love. You can experience romance and the right match will support you in your journey of healing.
When to tell the person you are dating can vary and depends on your level of trust. Since trust takes time to build, the first date is probably not the right time. By the fifth or sixth date, you will know more about how you feel towards this person and can start preparing to tell them about your disorder.
Choose a place to tell the person you are dating that is quiet and private and makes you feel safe. Explain your feelings for them and let them know you are ready to share more personal information with them.
Be prepared to answer questions they may have, which will likely revolve around intimacy, what happens when you are having symptoms, and how they can help.
Their reaction can give you great insight into what type of person they are, and if they are invested in your relationship.
Final Thoughts on Disclosure
You cannot control the reactions of people. You can only control your actions. This is your disease, giving you the power to decide who you tell, where you tell them, and how you tell them. You can even decide not to tell someone.
The most important part of disclosing personal information is to put your needs first. Ultimately, you are the one battling Lyme. Make yourself a priority, ask for help when you need it, and remember, there are treatments available that can help you live a long, healthy life.