Recently, the topic of isolation and ME/CFS has been raised frequently in emails I’ve received. So often when we’re in an unfamiliar place, we tend to be isolated. If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help. If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy. And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us. For ME/CFS sufferers, that creates a triple play of isolation.
In order to break out of isolation, we need to reach out. Unfortunately, the nature of ME/CFS separates us from many of the daily networks that we used to depend on for connecting and support. Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS can create. But despite our very limited energy levels, we need to reach out in order to create a support network. So how do we do that?
After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members. And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through. At the time, that seemed unbelievable to me. But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.
So for someone who is already dealing with ME/CFS each and every day, please understand that MOST of the people around you don’t know what you’re up against. And really, when you think about it, how could they? As ME/CFS sufferers, we struggle to understand the roller coaster cruelty of ME/CFS. It’s a nightmare!
OK, so you’re going to reach out. First, people need to know what’s happening to you. If you have a copy of my book, give it to the people close to you and ask them to read it. Or find other pieces written by ME/CFS sufferers and share them. This will be an eye opener for your family and friends. Then, come up with ways that people around you can help. Even the simplest things can make you and them feel better. Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
In order to break out of isolation, we need to reach out. Unfortunately, the nature of ME/CFS separates us from many of the daily networks that we used to depend on for connecting and support. Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS can create. But despite our very limited energy levels, we need to reach out in order to create a support network. So how do we do that?
After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members. And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through. At the time, that seemed unbelievable to me. But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.
So for someone who is already dealing with ME/CFS each and every day, please understand that MOST of the people around you don’t know what you’re up against. And really, when you think about it, how could they? As ME/CFS sufferers, we struggle to understand the roller coaster cruelty of ME/CFS. It’s a nightmare!
OK, so you’re going to reach out. First, people need to know what’s happening to you. If you have a copy of my book, give it to the people close to you and ask them to read it. Or find other pieces written by ME/CFS sufferers and share them. This will be an eye opener for your family and friends. Then, come up with ways that people around you can help. Even the simplest things can make you and them feel better. Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
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