Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core. By comparison, other difficulties in everyday life are less stressful and seem easier to handle. And of course I began to think about my ME/CFS/SEID days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.
This person didn’t know me when I was sick and I was about to mention my ME/CFS/SEID struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS/SEID. Whenever I had told someone that I was once sick with ME/CFS/SEID, I would see that association flash across a persons face. Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation. I became less then whole. Damaged with the potential to be weak or needy. Maybe even a burden. So I hesitated.
Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS/SEID, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease. And as I voiced that I had once been bedridden with ME/CFS/SEID, the response was OK. Better than I expected but it was still tinged with a bit of stigma. And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS/SEID frequently disappear from view.
Are you getting the crazy stigma when you talk about ME/CFS/SEID? How are you dealing with it? 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
This person didn’t know me when I was sick and I was about to mention my ME/CFS/SEID struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS/SEID. Whenever I had told someone that I was once sick with ME/CFS/SEID, I would see that association flash across a persons face. Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation. I became less then whole. Damaged with the potential to be weak or needy. Maybe even a burden. So I hesitated.
Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS/SEID, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease. And as I voiced that I had once been bedridden with ME/CFS/SEID, the response was OK. Better than I expected but it was still tinged with a bit of stigma. And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS/SEID frequently disappear from view.
Are you getting the crazy stigma when you talk about ME/CFS/SEID? How are you dealing with it? 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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