Anyone dealing with symptoms of Lyme disease or Morgellons knows that these conditions can be frightening. Your body is undergoing changes that can be painful or even debilitating. Although you might be sure that you’re suffering from one of these conditions, misdiagnosis of Lyme disease and Morgellons is quite common. In addition to prompting the wrong treatment protocol, misdiagnosis can end up having a huge impact on your mental health.
There are a number of common misdiagnoses given to people who actually have Lyme disease or Morgellons. For example, Lyme disease patients often receive diagnoses of multiple sclerosis (MS) or chronic fatigue syndrome due to symptoms of fatigue and weakness. Similarly, because joint pain is a common symptom, patients can be told they have arthritis (when it is really Lyme disease causing the pain). A simple diagnosis of the flu can also come about because of symptoms like low-grade fevers and malaise.
People with Morgellons experience symptoms of skin rashes or sores, fatigue, and depression, but most importantly, they report a crawling sensation on or under the skin (which many liken to insects moving or stinging). If a patient reports this sensation, it’s common for doctors to come back with an inaccurate diagnosis of mental illness and delusions.
If you receive a misdiagnosis of Lyme disease or Morgellons, you can end up wasting your valuable time and energy receiving inappropriate, ineffective treatment, rather than being able to get started on a helpful treatment regimen. Receiving a wrong diagnosis can be extremely frustrating because it’s likely your symptoms won’t improve in the slightest. Undergoing treatment (which can include lots of tests and medications) without seeing positive results can be disheartening and frustrating. When all you want to do is feel better, a misdiagnosis can prevent you from seeing any kind of real progress.

Aside from wasting your time getting treated for something you probably don’t have, a misdiagnosis can also have a huge impact on your mental health. You can experience intense feelings of sadness, hopelessness, and despair, which can stem from the frustration of a misdiagnosis as well as a side effect of Lyme disease or Morgellons. You might also feeling anxious or scared due to the many physical symptoms of these conditions and increased visits to medical professionals. In addition, when doctors can’t find the proper diagnosis, they can sometimes unfairly judge a patient. This might lead to you feeling like your doctor doesn’t believe you, which can then result in you doubting your own experience. Patients with Lyme disease or Morgellons can be labeled as “crazy” because their symptoms might not be easily viewed or verified – which, of course, doesn’t make them any less devastating to the person experiencing them.
All of these complicated feelings can lead to you developing depression and anxiety. So, how you can make sure you get the proper diagnosis without further harming your mental health?
1. Get educated
One of the most valuable things you can do is to get educated about your diagnosis. If you think you might have Lyme disease or Morgellons, do research on these conditions to see if your symptoms fit. Make sure you understand how these conditions are contracted, as well as how the symptoms might manifest themselves. The more research you do, the better you’ll be able to speak up for yourself with confidence.
2. Find the right doctor
Not all physicians are educated about the many complexities of Lyme disease and Morgellons. Either work with your doctor to get him or her up to speed, or consider finding another doctor who can provide you with the care you need. It’s imperative that you work with medical professionals who are up-to-date on the latest research and studies surrounding these conditions so that they can help provide you with the very best treatment options. Your doctor should be able to walk the path of healing with you – anyone who questions your symptoms or your experience is not the right fit for you.
3. Get professional help for your mental health
Anytime someone is struggling with a chronic illness (especially one as debilitating as Lyme disease or Morgellons), it can be helpful for them to speak with a mental health professional. Therapy can function as a way for you to get out your worries and frustrations about dealing with your condition. A therapist can also help provide you with coping tools and techniques so that you can feel emotionally stronger during your recovery process.

4. Name an advocate
It can be stressful trying to speak up for yourself in medical situations, especially if you’ve been misdiagnosed or mislabeled. That’s why finding an advocate for yourself can be immensely helpful. An advocate can help you meet your goals any time you have a doctor’s appointment, as well as assist in making appointments for tests or checkups. Having someone who can think clearly when dealing with the complicated medical world can be essential – you might need help with everything from dealing with health insurance companies to calling a doctor to ask a question. Your advocate could be your spouse, a family friend, or someone you’ve hired to help you out. Whoever it is, make sure they understand your diagnosis and specific needs so they can assist in the most effective way possible.
5. Locate a support group
Finding support while you’re living with Lyme disease or Morgellons can be vital in helping you cope. Whether there’s an in-person support group near you or an online support group you can connect with, you’ll be able to ask questions, voice concerns, or just get some helpful support from people who understand exactly what you’re going through. There’s no better way you can take care of yourself than to ask for support.
Don’t let a misdiagnosis of Lyme disease or Morgellons bring you down. Follow these tips to help you get the right diagnosis and to better take care of your emotional health.