Are You A Myasthenia Gravis Caregiver?
Being the loved one of someone who recently got diagnosed with Myasthenia Gravis is never easy but it can be even harder if you also happen to be their caregiver. If your spouse, child or parent got diagnosed with MG after some time of uncertainty, symptoms with no explanation, or at the opposite end of the spectrum – all of a sudden with no prior warning the disease manifested itself… it can come as both a relief and a shock. Now you have a name for what is happening to your loved one but you also face a long journey of searching for the right treatment and braving life with MG together.
After you equip yourself with all the available knowledge about myasthenia gravis you can find, after talking to medical professionals and weighing your options, you might want to see through the perspective of your loved one. On the FindMeCure blog, you’ll find information about resources as well as personal accounts, so you can begin to understand what a person with MG might be going through internally. You might want to share our post about myasthenic crisis with all the people in your loved one’s life that might happen to be nearby in a time of emergency. Of course, this depends on who your loved one feels comfortable sharing their diagnosis with.
Today, however, we want to focus on you, the caregiver, and what you need to know and practice in your own life in order to be the best support system for the person you cherish. Taking care of someone who lives with MG is a journey in and of itself and we’re here to provide some guidance and insight.
Seek more information. After hearing the diagnosis, you may have started doing your own research – reading about the mechanism of the disease, the more obscure symptoms as well as innovative treatments in development and emerging areas of research.
Educating yourself about myasthenia gravis is the first step. Gathering addition information is next. Find out about support groups in your area, charities and volunteer work, ways for your loved one to feel involved in the patient community, share their experience or exchange tips with other people who live with MG. You can take it upon yourself to talk to caretakers and friends of MG patients or look for a counsellor trained to support people who live with chronic illness. Realising you don’t have to figure out everything on your own and you can have a whole team and a community if you choose so can make you feel supported and connected.
Offer meaningful help. Though you may have a lot of solutions for common problems you face day to day, your loved one may not find them useful or applicable to their circumstances. In order to be truly helpful, you’ll need to communicate with them and find out together what their needs are and how they vary depending on the day. People with MG often report that some days can be worse than others with their symptoms suddenly intensifying. You’ll need to plan for those days together.
Offering the right kind of help will make your loved one feel heard and understood. Sometimes, however, they may not feel comfortable asking for assistance or they may not be able yet to communicate what kind of help they need. It’s very thoughtful to check in with them to make sure they’re doing okay or give them a chance to ask for the kind of assistance they need.
Learn to communicate better. You may not believe it initially and you don’t have to but learning to navigate life with a chronic illness can improve your connection and strengthen your bond. You will need to be extra efficient in communication in order to address their worries and fears in a meaningful way.
Whatever the type of your connection, you will need to learn how to reassure them and make them feel loved. Many people who need assistance from their loved ones report feeling like they’re burdening them. Make sure your partner/child/parent/friend with MG knows that helping them meet the demands of their life adds meaning to your own life in turn and it’s an opportunity, rather than a burden.
Make time for fun. It’s important that you and your loved one don’t let MG take over your relationship. Making time to enjoy life in whatever way your current circumstances allow is crucial to maintaining a positive outlook. Whatever your relationship is, it wasn’t always a strictly caretaking one – revisiting your favourite places, activities or conversations from before the diagnosis can provide a sense of normalcy and reassure both of you that the important things haven’t changed.
Don’t allow your interactions to become one-sided. People who live with MG may not always or at all be able to help with chores around the house, especially the more physically demanding ones, but they still want to contribute like everyone else. Allow your loved one to be a good listener when you’ve had a long day or help you with a task they can do.
Approach it as a dialogue. If your loved one recently got their diagnosis, they may not know yet what kind of obstacles they can face in their everyday life and so they can’t give you the blueprint for taking care of them when they need it. Approach assisting a person who lives with MG as a dialogue – you both find out new things together.
Have patience with them and with yourself. You won’t have it all figured out tomorrow but you also won’t remain clueless either. Learning to navigate life with a chronic illness takes time. Patients often feel helpless initially but eventually gain more confidence in their capabilities. The caretaker may also have a similar experience.
Don’t forget about self-care. In order to provide meaningful support, you need to take care of yourself first. Don’t feel like you can’t ask for help or take some time for yourself when you feel overwhelmed. Have a plan in place for those occasions, as a person with MG may suddenly and unpredictably experience a flare-up. As long as you have prepared in advance, however, take some time to do what you enjoy and fill your own cup.
Getting the proper treatment for myasthenia gravis can be a challenge of its own. Sometimes symptoms don’t improve significantly or side effects make life miserable. If you’re interested in discovering innovative treatments, the world of clinical research is where you should look. Find a clinical trial that seems like a good fit for you or your loved one and get access to treatments in development that could be a game-changer.