The process of getting diagnosed with a rare disease, as well as living with one, can be a traumatic experience for patients. Many rare disorders or conditions may commonly cause mental health problems, and often the sheer stress of being constantly sick can be enough for mental health challenges to appear. 69 percent of rare disease patients report being depressed and an even greater percentage report feelings of stress and anxiety. Frightening emergency room experiences can induce problems such as PTSD. Clearly, there is a significant need for therapy to help support the rare disease community.
Online Therapy
However, therapy usually means traveling to an office to speak with someone face to face. Unfortunately, this is not always practical for patients with limited mobility or who live in rural areas. As a result, some patients have resorted to online therapy as an alternative.
Is online therapy useful for rare disease patients? The short answer is yes. However, getting started with online therapy can be a challenge and the same arrangement is not going to work for everyone. In a review assessing the effectiveness of online therapy, it was found that online therapy was commonly used for managing more common mental health conditions like OCD, generalized anxiety disorder, depression, PTSD, and more. Online therapy offers some advantages over traditional therapy, particularly in the treatment of younger and lower income patients. Online therapy can be more cost-effective and follow-up can be more consistent.
However, when therapists are involved, they are often the ones most responsible for making sure that therapy is being conducted lawfully; some therapeutic services are not operated solely by therapists, and they may not have a good understanding of medical law. There are also concerns about ethics and patient privacy. There are also significant disparities in the quality of service. In this reddit thread, patients discuss their dissatisfaction with one such service.
Patient Feedback About Online Therapy
We also talked to one of our patient contributors, Leslie Stratta, about her experience with online therapy. She has primary biliary cholangitis. Leslie says that the therapist that she currently works with is someone that she originally met for therapy in person. However, Leslie has since moved but has continued seeing the same therapist in online video sessions for the last five years.
“It still allows me to talk through issues as they come up.” – Leslie
While Leslie’s situation is not the same as seeking out an online service from the start, if you are seeing a therapist in person and the visits are challenging due to mobility or fatigue, it may be worthwhile to ask your therapist if they would be willing to conduct sessions over a video service such as Skype, Zoom, or Google Hangouts. This may be especially valuable if you have already established a good relationship with your therapist.
“The fact that we can see each other over video conference makes it a little more personal.”
Typing into a website or app, or just talking into a screen, can make online therapy seem unappealing and impersonal to some rare disease patients. If this seems like a barrier for you, look for service where face to face video chat is an option.
“You have to find someone who, long term, is going be able to help you achieve your goals.”
Leslie also stresses the value of trying to find a therapist that is willing to work with you long term. This is another important consideration when seeking out online therapy services. Look for providers that will allow you to stick with a single therapist so that you can still build the personal relationship that traditional therapy can provide.
“It helped me realize what I already knew: that this disease doesn’t have to define me. I do think that online therapy, if you are a patient with energy or mobility issues—to be able get on your iPad or computer and talk to someone definitely helps.”
Ultimately, online therapy can be a valuable resource for rare disease patients that are facing mental health challenges, and it can make therapy more accessible to patients with limited mobility or who face too much fatigue to travel easily to an office. Just make sure to research a service thoroughly to understand its full range of features and to see if users are satisfied before going forward.
