Hope – That Four Letter Word

Most polite interactions begin with some greeting that includes “how are you?” The courteous thing to do in response is to say “I am great/fine/well/good (this one only if you want to get scoffed at by the grammar police), and how are you?”. They respond with one of the provided, positive options, and we all move on from there. It is not customary to launch into how you actually might be at that given moment. If someone were to start off with “well my car got towed, my cat ate some poison, and the Patriots lost…”, I might slowly back away from this over-sharing weirdo all while silently cheering that the evil Patriots lost. (Boston won’t brainwash me that much!) I was trying to be nice, not get your life’s story. You should have given a banal response and returned the question, not made things uncomfortable. Not that this is correct attitude to have. I wish we all meant it a bit more when we asked after someone’s well-being. But that is another topic for another time.

Well this question has taken on a whole new meaning for me. I find it a challenging one to answer. I nearly always hesitate, even when my mom asks me. We have devised a system whereby if I say that I am at a 10, it means that I could go get a pedicure and enjoy it. And if you know me and my mom, that about sums us up. I am sure responding to this question is challenging for a lot of people. We are complicated beings where a whole lot more is going on behind closed doors than anyone might guess. I think this holds true for pretty much everyone! But I didn’t stop to think about this question or my response much until I became ill. Until someone asks you that oh so customary question, and it’s taking all of your willpower to sit-up and act “normal”, trying to put forth an image where your joints aren’t on fire, your brain isn’t fogged from fatigue, and the room isn’t spinning. If someone I don’t really know is asking the question, I will answer with one of the aforementioned platitudes. They didn’t sign up for the weight behind that query. They were trying to be polite.

If a friend or family member is asking me, someone who knows my health situation, they will usually stress this question to me. They want to know “how are you?”.  Tangent time! There have been some silver linings to being chronically ill to the degree that I experience. And one of those silver linings is having true friendships and realizing just how lucky I am to have the family that I do. The people in my life are amazing. Friends who remember dates of important medical tests and check in on them. Friends who truly want to understand what I am dealing with and take time out of their busy and full lives to learn about my condition. Like without me there. Like on their own watching videos and reading articles. I am getting emotional just thinking about it. And don’t get me started on my family. I won’t get back on topic. Suffice it to say I hit the jackpot both with my chosen family (my dear husband) and the one I was born into. Back to the topic at hand! When one of these MVPs of my life asks that all too common question “how are you?”, I am pretty honest at times. After unloading on them, I am of course met with compassion and love. I am also met with hope. “I hope things improve soon” “I hope this crash passes” “I hope that test result comes back in a helpful way” Because hope is almost the only way to respond to this situation. You have to hope that your loved one will improve from the cacophony of physical nonsense they just riddled off. And hope is important! This is not an anti-hope post. I just want to explore hope a little bit as it relates to an incurable disease.

What has me thinking about hope more than usual was a test result that I received this past week. If any of you want an excellent documentary to watch on ME/CFS, “Unrest” on Netflix is a great option. The woman responsible for the piece is named Jen Brea, and has become a bit of a celebrity in the ME/CFS community, bringing awareness on a scale not seen much before the release of her film. She also has ME/CFS. Or rather she had it. She discovered that the culprit behind her ME symptoms were some structural issues in her neck leading to instability. She was able to have a surgery to correct this instability, and her ME has been in remission ever since. There are many prevailing theories as to what leads to the many symptoms experienced with ME. And the answers seems to be that many things could cause it, one of them being a structural issue in the neck. My doctor and I thought I could be possible candidate for this issue, as I have been in a few serious car accidents and was told by an orthopedic surgeon and physical therapist that I have a hyper-flexible spine. So I had the appropriate MRI testing done, and the results were not promising. I do not appear to be a candidate for this possible cure of a surgery. I took the news much harder than I was anticipating. Before the testing was done, I thought that no matter what happened, I wouldn’t be worse off than I am now. However, when the news came back, I was clearly holding onto a lot more hope that I had originally thought. An option for improvement had been taken away. A possible solution was no more, and that hit me hard. Hope is so tricky. You have to have it. You cannot live without hope. But you also can build yourself up to feel some pretty low lows when those hopes are dashed.

When I first started posting publicly about my illness, one thing I wanted to do was speak for those who could not speak for themselves. Those severely affected with ME/CFS are stuck in darkened rooms where they cannot tolerate light or sound, sometimes even touch. The idea of them being able to sit up long enough to type out their thoughts is pretty much impossible. Even that little of activity and stimulation would send them into a crash, where their pain, fatigue, and brain fog would worsen. It is challenging for me to collect my thoughts into a somewhat coherent post, and I am nowhere near as sick as them. Hope is about the only thing to hold onto when you can experience so little of life. Hope for treatments, and dare we go there, hope for a cure. But it is also difficult to hold onto hope, and realizing the reality of what this illness is can be daunting to take on all at once.  

Yes, there is research going on, and there are some powerhouse scientists and doctors attempting to unravel this complicated, stigmatized, and poorly understood disease. But there is practically no funding for research. It is nearly all raised through private funds. There is not nearly enough public awareness or even awareness in the medical field. My gastroenterologist at MGH is great at treating the stomach conditions I have, but she walked into the room and asked “Are all of your medications making you tired?” I was like…”I am pretty sure my debilitating chronic illness is doing that…not the meds that are the only thing keeping me upright”. She is a medical professional at one of the top hospitals in the country, and she doesn’t even understand what I am dealing with. The combination of having this illness and then feeling like I have to validate it to not only people around me, but to my own doctors (outside of my specialist who is an angel sent straight from heaven to give me hope) can be incredibly draining and taxing. It can make you feel like giving up and going at it alone since your doctors won’t take you seriously.

And let me be very clear (channeling my inner politician in honor of the 2020 election), giving up is not the same thing as acceptance. Accepting that you have a very real illness causing you debilitating fatigue and pain that only gets worse with exertion is an important part of anyone’s journey with ME/CFS. I did not accept that I was ill for about 3+ years. I was just getting over mono and was totally fine. Except I wasn’t. I was in a push/crash cycle that would leave me so much worse off. A part of this was again a lack of knowledge in the medical community that delayed my diagnosis years, but a part of it was also thinking that accepting that I was sick meant “giving up”. Giving up is not caring. Giving up is not fighting for my mental health. Giving up is not educating the humbler members of my medical team. Giving up is not what I am about. But realism must become a piece of the puzzle as well. Hope has a part in that realism. Advances have been made and will continue to be made. But people have been ill their entire lives with ME/CFS. Many people will die with it, and some even die from it. Again, this isn’t to be morose or negative. It is to realize the scope of this disease. That it is tragically underfunded, and I had to scour the country for a specialist to help me. A real, actual doctor…not someone claiming eye of newt will heal me. Because believe me, as much of the medical community ignores those with ME/CFS, some have been forced to seek aid from charlatans masquerading as doctors doing harm in their own way. Note: I want to say that if you have found help and aid outside of traditional medicine, power to you! I know we will take what we can when it comes to improvement. I am just maligning the fact that vulnerable people end up spending a lot of money for empty promises of help from untrained and misinformed “professionals”.
 

So what gives me hope? The compassion I receive from friends and family gives me hope that more people will care about the chronically ill. I have hope that others will care if someone they know and love is affected. I sometimes wish that it didn’t take this so often, but I also know that everyone has their own cross to bear in life. Everyone has something they struggle with, and if we can make the lives that we touch a little better, we are doing what we can. The doctors and researchers taking on this challenge give me hope. I am so blessed to have access to the medical help that I do. My husband provides the resources necessary to ensure I receive amazing care, and we live right down the street from amazing hospitals. This isn’t the case for all with ME/CFS (or other such misunderstood illnesses), and I hope to have conversations about how to improve care in the future. Hopefully (eh, see what I did there 😉) raising awareness can be a start. Lastly, anyone reading this blog gives me hope. The fact that you read all the way to the bottom of this post means you have compassion and want to learn about the experience of someone with chronic health issues. Way to go, you!