My father thinks I was being pessimistic about those side effects Tecfidera is known for. I don’t think so. For starters, my father didn’t even know what kind of side effects he was talking about until I enlightened him. Continue reading
Another World MS Day has come and gone. This year the theme was Access and a lot of initiatives were organized around it. On the official website there were cards and posters we could print or send to thank the people who are breaking down the barriers to access – the people who are making it easier for us to live with MS. The hashtag #StrongerthanMS was the motto, as in together we’re stronger than MS. Social media was flooded with messages. But as I went through hundreds of posts on Facebook and Twitter, I started feeling a bit concerned. Continue reading
I stole the title of this post from one of the chapters in the book When the Body Says No, by Dr Gabor Mate, because it said a lot of interesting things about positive and negative attitudes towards chronic illness, which is what I want to rant about.
After a while of being diagnosed with multiple sclerosis, when trying to keep my head above the water became less strenuous, I started trying to connect with other people like me. I found a lot of communities. Some of them were filled with people struggling with a lot of challenges and difficulties, and as much as I wanted to help and give my support, it became really depressing to visit those communities every day and read all those complaints and think that those things can happen to me someday,
And then I found other communities that were the exact opposite. At first, I wanted to jump on the positive wagon. I mean, who doesn’t want to be surrounded by positivity, right? But then again… I changed my mind. Some of the people who are members of these communities are bloggers and guest bloggers that go around the internet giving you tips and recipes to manage your day, your symptoms and your well-being. But some of them, if you follow them on Twitter, spend their days complaining about how their legs gave in, they couldn’t leave the house, they were in such pain, etc. And it gets depressing. More depressing than the depressing communities. Because these people sound like – and here comes an ugly word – hypocrites. There, I said it.
Another thing that’s bothering me is their advice. This week I clicked on a link to a blog post with tips to managing brain fog. I suffer a lot from brain fog so I was interested. And then I was disappointed. The tips included “Take naps along the day” which I would love to but I’m working 9 to 5 and I can’t really nap in the office, “Drink lots of water” which is lovely but I’m already drinking 2 liters a day, should I really drink more and become a swimming pool?, and “Cut on caffeine”, another great tip since I only drink one coffee a day. There’s probably a chance these tips are going to help someone, but to me they just felt unrealistic, childish and indulgent.
But that’s not the biggest problem I have with all this positivity. Today I watched an interview on a news channel with a fellow MSer about my age that really pissed me off. Among other things, she said that if you believed in your dreams you could make them come true. I may be a little skeptical and sound a little mean here, but I’ve lived enough to know that’s not true when you have such a debilitating condition like multiple sclerosis. I don’t believe in unicorns. I believe that if you’re strong-willed, if you have supportive people around you, a great team of healthcare providers and – let’s not kid ourselves – some money, you can make things happen, yes.
Statements like “Just believe you can” are not only misleading but they can be offensive too. I’ve read stories that made me feel like I’m not a worthy MSer just because I can’t run the marathon or climb the Everest. I could barely run 4 miles after 4 months of training, before I gave up because of the winter. Oh yes, I forgot to mention that I’m the only MSer who isn’t bothered by the heat, it’s the cold that gets to me, so I guess that’s another reason I’m probably not a worthy member of the family. I could write a great post with tips for all of you to survive the summer (try being born in a Mediterranean country, you’ll grow up used to really hot and really long summers) but I don’t pretend to know what works best for you and preach about it. Everyone is different. And no, it’s not great to have a chronic illness and have to deal with things most people don’t even dream of, so don’t make it sound like it is. Yes, there are good days too, and humor in many situations, but you can feel it when it’s authentic and when it’s not.
“Compulsive optimism is one of the ways we bind our anxiety to avoid confronting it. […] The onset of symptoms or the diagnosis of a disease should prompt a two-pronged inquiry: what is this illness saying about the past and present, and what will help in the future? Many approaches focus only on the second half of that healing dyad without considering fully what led to the manifestation of illness in the first place. Such ‘positive’ methods fill the bookshelves and the airwaves.
In order to heal, it is essential to gather the strength to think negatively. Negative thinking is not a doleful, pessimistic view that masquerades as ‘realism.’ Rather, it is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to? Without these questions, the stresses responsible for our lack of balance will remain hidden.”