Getting diagnosed with a rare disease like neuromyelitis optica spectrum disorder (NMO) can leave you with a range of emotions. Fear, anger, uncertainty, anxiety, and depression may all occur. Your emotional journey may look different from that of others.1
Understanding that these emotions are normal, finding tips and resources to help with different emotions, and building your emotional support will help with your daily management of NMO.
Mental health and NMO
Stress, pain, depression, and anxiety often occur in those with NMO. Mental health concerns may result from direct damage to central nervous system structures (nerves in eyes, spine, or brain) and the unpredictable and progressive nature of the disease. However, mental health problems are also common in the general population. There are not enough studies to confirm that mental health problems are directly linked to NMO. More studies will help to learn more about this possible connection.2
There is no doubt that NMO can lead to stress and increased emotions. Getting the diagnosis you need and deserve is a priority for not only your physical health but also for your mental health.
Living with the unknown
An attack of NMO usually happens quickly and can result in vision loss and paralysis, which may or may not be permanent. This sudden loss of function is shocking and can disrupt your entire life. The emotional, mental, and social health implications of NMO cannot be ignored.3,4
You may have uncertainty about the future because even doctors do not know all the answers to NMO. The average person with a rare disease waits 4 years and sees 5 different doctors before getting diagnosed. Some may wait much longer. This waiting game and uncertainty add to the emotional toll of NMO.5
Sometimes, you may deal with others who do not believe you really have your symptoms. Mental health concerns in rare diseases may be dismissed as “just stress” or “something you can get over.” This lack of understanding may even come from those closest to you. This may leave you feeling isolated from friends and family.4
Finding and building strength
Building your emotional strength when faced with the many challenges of NMO might not be easy. However, with the right tools, the struggles you may face may seem more manageable.
Finding the right balance of physical and emotional support is a good place to start. This support will help you prepare for the unknowns of NMO. Who are the people you can rely on? These people will be the framework for your support network. You may be surprised at who makes up your support network. Joining support, advocacy, and social media groups and following nonprofit organizations that support NMO research may also help build your emotional strength.4
Adopting coping strategies
To build your emotional strength and resilience, adopting some coping strategies may help.
Practice self-care
Imagine your emotional strength as dollars. A healthy person may get 25 dollars to spend per day on their daily stresses and normal life events. If you have NMO, you get 10 dollars. You have to learn to spend your emotional dollars wisely and plan for days when you need to mentally spend more.
Are you extra tired today? Giving yourself time to rest and recharge may be the answer. Practicing self-care is hard when you have obligations in your life. Be kind to yourself. NMO has its challenges, and you are bound to have ups and downs. Finding emotional balance and practicing self-care may take time, but it is certainly worth it.
Identify your needs
The unpredictability of NMO makes it hard to know and identify your needs. You may not know what you need at times. However, unmet physical, mental, and social needs will add to your stress. Try to recognize your needs in order to find a way to meet them. Ask for help from trusted loved ones, who may be able to see unmet needs you have trouble identifying.6
Expect the unexpected
Those with NMO have reported feeling like they have put their lives on hold between attacks of the disease. While NMO attacks are unpredictable, it can be helpful to prepare yourself ahead of time in case you have an attack. First, keep an updated packet of information that contains your important health details, including:7,8
- Contact information for your doctor
- A list of all your current drugs and supplements and the doses for each
- Health insurance information
- Your emergency contacts (friends or family)
- Your medical history and hospital records
Finding the help you need
Along with your doctors, you may find the help you need from foundations or nonprofits. These organizations exist to support those affected by rare diseases and NMO, with forums and outreach for those living with the disease:9
- Guthy-Jackson Charitable Foundation
- Siegel Rare Neuroimmune Association (SRNA)
- National Organization for Rare Disorders (NORD)
Do not be afraid to reach out to your doctor for mental health help. You may find that therapy and other treatments help you cope.
You may have a rare disease, but you are not alone. Living with NMO is a journey that will have its ups and downs. Understanding and recognizing your emotions helps you to better understand and prepare for your future. There is strength in the support you build and develop over time.