In general, I don’t, but this is something I would like to change. There is a huge stigma against people with this disease. I have lost friendships and experienced weakening of my family ties as a result. When I was at my sickest, all of the people close to me pulled away at the same time that I most needed their support. People who I considered my closest friends would say, “don’t you have anyone else you can lean on for support?”
As a result, I go as long as possible before telling anyone that I have ME. This is a double-edged sword because if people do not know what I have they can’t help me. Also, if all the patients are too scared to come forward with their diagnosis, how can we make progress as a society in awareness, reducing the stigma, and raising money for research?
However, keeping the disease a complete secret is difficult because my abilities are so limited. This creates situations that are hard to explain or be misinterpreted if people do not know I am unwell. For example, explaining why I was late or missed a lecture or turned down that invitation to a place that was inaccessible to me. I am extremely clumsy and often struggle to find my words which is unusual for someone so young. Instead, if I need to tell people I will tell them I have a mitochondrial disease. This is technically true and I have test results that confirm mitochondrial dysfunction. If they shut down after this I will not tell them anymore, but if they are interested and ask more questions I will explain the implications of having a mitochondrial disease (poor thyroid function and hormone production, dangerously low blood pressure and temperature, susceptibility to viruses that are harmless to healthy people). Very few remain interested past this point, but for those who are, I will eventually share my ME/CFS diagnosis. At first this process would take a few weeks, but as I tested out my strategies I was able to get a caring listener up to speed on the basics and not completely out of my life within a few days.
Messaging is important here. When I tell people a piece of news, I listen to how they react. If they do not react well, I decide those words did not communicate effectively what I needed and I choose different words the next time. It also helps to show them links from credible researchers in the field. Between the time you say the words “ME/CFS” and losing that person’s attention (and more importantly their emotional support) you have a few minutes or hours at the most. It is critical to use this time wisely. This is especially true considering that they will be googling the disease, potentially while they are still talking to you, which will show a wealth of misinformation in the first few results.
These are the links I use first when breaking the news to friends. What I have said is that they can google all they want if they are still interested in ME after reading these articles and watching these links, but to please start here.
- Jen Brea’s TED Talk
- Article from ABC also with Jen Brea
- Ron Davis talking at Million’s Missing Protest – This is a super short one and if I am not close friends with the person I will start here because it’s only 7 minutes and does not require much from them.
- Ron Davis podcast: The Last Major Disease To Be Studied? Ron Davis of Stanford Thinks So – Ron Davis is one of my favorites to start with because he led a major contribution to the Human Genome Project and is literally impossible to argue with.
- Neuroscientist at Harvard’s teaching hospital explains why we should treat ME even though we don’t completely understand it (answer to questions 8 and 9)
- The Independent: Concisely describes the history of the politics of ME
- Invisible Illness: Short video describing the challenges of caring for an ME patient and the stresses on the family. Ron Davis talks about how due to caring for his son he has lost all of his friends.
- Janet Dafoe (wife of Ron Davis at OMF) responds on an ME/CFS forum to a DailyMail article. Summarizes the issues with a lot of ME/CFS coverage
- White House Chronicles covers Tom Camenzind
Movies are good, but in today’s instant gratification obsessed culture, it’s very difficult to get people to commit to one. I’ve only had three people close to me watch an ME movie. One of those was my immediate family who I was struggling to interact with when I was at my worst. They eventually watched Forgotten Plague after I gave them the silent treatment for a week (yes, their attitude toward my disease completely changed for the better after they did). The other was a friend who came with me to a screening of Unrest in London. I came out to her about it over dinner afterwards.
The good thing about this strategy, if you can get people to commit to it, is that it is very effective. My friend from London said ME is so complex it would be impossible to learn about it in any less time. I agree. There are friends I’ve spent hours talking with about this who understand it less well than if they had watched it on screen. This is exhausting for me because it takes so much energy to describe this experience to others and at the end of it, people understand less than if they had seen or read the resources themselves. As Jen Brea has said so often in interviews, some stories must be told visually. I could say the exact same words in the exact same order, but it will never sound as convincing as it does from Ron Davis. This is especially so for the most striking details, for example, that researchers who study ME say it is just as severe as MS or late-stage AIDS. This would sound like hyperbole coming from an individual patient. Due to this, I’ve started doing everything to use the words of others to help them see my story. Hopefully, this can help you as well.