Why I Don't Tell People I Have ME/CFS

I have ME/CFS.

Man, that is really hard for me to say out loud. It is hard to even accept the fact that this unwanted alienator is going to be present most likely the rest of my life. It also is hard to explain what ME/CFS feels like. As is true with most everything in life, unless you have experienced it, it is hard to understand. You can relate the fatigue to the one time you “over-exercised” and were sore for the next couple days, but without trying to undermine you and be rude, I can promise, it’s not the same thing. When you do find a friend who experiences the same illness, you immediately gravitate to them and become best friends, because they understand at levels most don’t. Kind of funny the friends that I probably wouldn’t have come to love as much as I do now because I found out they too struggle with chronic illness. We share a really weird something in common, making us lifelong friends.

 

Just today I had a friend (who also has chronic health conditions) ask what illness it is that I have. My response was, “It’s probably better to ask what I don’t have.” I have three children, and after delivering each of these children, my condition has worsened. In the last six years (my oldest is 6), I have been to several physicians. I have had several diagnoses. So many in fact, that if I was to list them, I would bore you and if I’m being honest, myself too. It wasn’t until my third child that I started noticing patterns of my illness and researching and found a neurologist who helped guide me to where I am today. Her guidance helped me to reach a specialist who has now diagnosed me with ME/CFS, fibromyalgia and POTS.

ME/CFS has many names and faces. It has been called ME (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), SEID (systemic exertional intolerance disorder), PFVS (post-viral fatigue syndrome) and CFIDS (chronic fatigue immune dysfunction syndrome. Do you now understand why it is hard for me to explain? The name can’t be agreed upon, the cause is unknown and there is no diagnostic biomarker (or way of testing for a definitive diagnosis, such as a blood test, etc.). It is characterized by severe flu-like fatigue and exertion intolerance, limited functional capacity, post-exertional relapse or malaise, headaches, muscle or joint aches, dizziness or orthostatic intolerance, cognitive dysfunction or impairment, sleep disturbances and infection or allergy symptoms such as sore throat, tender lymph nodes, low-grade fevers.

Though it was difficult to swallow the reality of the conditions, the diagnoses have made it so much easier to live my life. Coming to accept what is rather than wandering to and fro finding answers has been incredibly cathartic for me. When I began to write and share with the world, it helped me to stop “pretending.” Before my diagnosis, I had some family and friends who had no idea I suffered every day because I “hid” my illness well. Which is why I want to share a really small and incomplete glimpse of what I feel like. In case you wanted to know.

Yesterday I went to two stores and the bank all in order to get ready for family coming over for Independence Day. It took no longer than two hours, and today I am so fatigued and feel as if I’m coming down with the flu. The difference is, I have experienced this several times a week for the last six years at varying degrees of severity, so my body and my mind have gotten used to it. This is why not even my closest friends and neighbors know what it is I struggle with. It has become part of who I am, at least for now. Chronic illness can also be known as “invisible illness.” It is hard to see what people struggle with when you can’t see physical manifestations.

On days like today, I still go out to the flag ceremony, breakfast and the beach with my family in the morning. And I will still have my family over for dinner tonight to celebrate America’s freedom, which also happens to be my favorite holiday. Today I will have rested for several hours in between activities and for the next couple days I will need to make sure I rest and take “proper care” of myself to regain my strength. My legs feel like lead and I am oh so tired. I will sit on a stool while preparing meals.

Today, when it is close to 100 degrees, I am wearing compression pants so that when I stand up I don’t feel lightheaded and black out. Today, when the rest of the world is celebrating America outside, I will make sure I am inside in my really cool house (minus the few hours we spent outside in the early morning) so I don’t feel so awful. No, I won’t complain to you. No, I won’t tell you how hard it is sometimes. Because I have been blessed with so much. So much more than I can even possibly put into words. And so I carry on each day, just like all the rest of my friends will do.

This is a small part of ME (get it, ME/CFS). This is what it is to live with it day after day for several years. And this is why when you ask what it feels like or what I have, I might seem really awkward. Because even people with ME/CFS don’t fully understand what is happening to their bodies. In case you wanted to know!

I believe in you. I believe you can make miracles happen. And I believe that peace (true inner peace) is the answer.

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Thinkstock photo via Maria Kuznetsova.