I’ve been sick with Myalgic Encephalomyelitis (ME/CFS) since 2001. Myalgic (muscle pain) Encephalomyelitis (inflammation of the brain and spinal cord) was commonly called Chronic Fatigue Syndrome. I find the name (CFS) greatly under-represents what this illness truly is. Calling it Chronic Fatigue makes it incredibly easy to dismiss and minimize.
Living with ME/CFS since 2001, I have learned a lot about myself and this illness. If you’re wondering how to interact with me, I want to be believed and trusted, and for others to respect the boundaries I need. I did not write this to garner pity, unsolicited medical advice (nobody wants this!), or to be treated like I don’t understand my own illness. I am open to questions and conversation (no MLM’s or “essential oils” please).
Explaining to people what this illness looks like can be difficult and draining, so I rarely dive deep in my explanations. But for multiple reasons I felt like now is the time to share in my experience.
Doctors & Dismissal
I’ll start with the doctors, as that’s where we began when this whole thing started. Over the course of months (that turned into years) I visited doctors, specialists, naturopaths, herbalists – anyone who may have an answer to what was happening in my body, and why. They ran dozens of tests, all returning normal. I was seemingly a very sick, “healthy” girl. I was 15 years old, quite active, healthy weight, interested in school, art, and music. I was involved in church activities and was deepening friendships all around.
Until I was hit with this debilitating illness.
I went to doctor after doctor who told me to my face that I was making it up. I was told I must be depressed, and that was what was causing my symptoms. I had drugs pushed on me with no psychological evaluation made in the prescribing and deciding. When those didn’t work (and gave me very scary side-effects), they gave up and told me they couldn’t help me. Besides, they believed I was making it up anyway. I had only a few kind doctors who took time with me, believed me in what I was experiencing, and then respectfully told me they literally had no idea how to help. Those particular appointments gave me the most hope. I finally found people who cared.
The Beginnings & an Overview
I have no idea how or why I got ME/CFS. I came home sick from school one day with the flu, except one week later when I should have bounced back to normal, I didn’t. My flu-like symptoms continued for months. The first 8 months were the worst of it for me. During that time I was almost completely bed-ridden. As a 15 year old, I literally didn’t have the strength to sit up in bed, much less do anything productive. I was suddenly sleeping an average of 16-18 hours a day, every day. This fatigue was unlike anything I had ever experienced. I don’t have a great way to explain it for those who haven’t experienced it, but the best I can come up with is that it felt as though someone was actively syphoning every bit of energy and strength from every muscle in my body, while simultaneously having tied heavy invisible weights to every inch of my body. I felt as though I was being pulled deeper into my bed, unable to move. This fatigue is never quenched. Since my diagnosis almost 20 years ago, I can not think of a single day where my body felt refreshed from rest. This is one of the hallmarks of CFS/ME: Unrefreshing sleep. It’s a catch-22. I have to sleep an abnormal amount to function, but no amount of sleep “helps.” The only caveat is that not getting enough sleep makes everything worse.
In addition to this debilitating fatigue, I had quite a few other symptoms. Muscle weakness that made it difficult to lift an arm. I had very frequent headaches – and quite often got icepick headaches, that disabled me for about a minute at a time, as the pain was so unbearable I couldn’t do anything but squeeze my eyes shut and wait for it to pass. I had brain fog that made me forget what I was saying mid-sentence, or that would cause me to need to re-read a paragraph a dozen times before something stuck. I had constant nausea that wasn’t caused by or fixed by anything. I had frequent dizziness and light-headedness when I sat or stood up. I had muscle pain (though thankfully not nearly as bad as many with ME/CFS). I had impaired coordination, and would often get minor injuries when my symptoms were at their worst. I had what seemed like an irregular heartbeat, though was never picked up when I went to get an EKG. I had insomnia, often spending hours a night wide awake, unable to do anything, barely able to get out of bed, so I just had to lay there, waiting for sleep to come again.
One of the most telling symptoms of ME/CFS is PEM (post exertion malaise). In a nutshell, this means that any bit of exertion I do (physical, cognitive, or emotional), causes me to crash, relapse, or at the very least need recovery time. During this crash my symptoms get worse for a period of time. There is nothing I can do to prevent it, and there’s no telling how long a crash will last. At 15, this meant at the time that the energy it took to shower sent me back to bed. Going downstairs for dinner sent me back to bed. Studying for an hour at a time was all I could handle before going back to bed.
I got to a point with school, that if I didn’t make it back (physically unable at the time), I would miss the year and have to retake it. The school district sent over a tutor to help get me through some basic class work. My concentration and memory were so terrible, I barely made it through. Again with this person that was supposed to be my advocate, I experienced the dismissal that so often occurred with doctors and others. That “tutor” told me to my face that I was fabricating the whole thing, and then informed my mom that she was not a good mother, as she was just enabling me – as the tutor ignores me practically falling asleep at the kitchen table.
If I were to rate how bad my health was at when I was first diagnosed in 2001 on a scale of 1-10, I would say I was at an 8.5 (10 being constantly bedridden, unable to care for myself). Today an average day would put me at about a 4. I’m functional, can work a few hours a day, do minimal daily tasks, but ME/CFS is very much a part of my daily life, and dictates to an extent how I am able to live.
PEM is still a very real thing for me. Walking to the grocery store on a day where my energy is very low can send me to a crash for the next day. Other days when my energy is better, it barely affects me and the recovery looks very different. When I travel, the physical and mental energy it takes just to get to the destination causes me to need to plan down-time so that I can rest and not exert myself upon arrival. If I’m to spend time with people (even if we’re best of friends), I have to expect recovery time that will vary depending on the emotional and mental energy I need to exert. I can definitely push myself some days, going on longer walks across the city, spending time with people for hours – but always have to expect that there will be some time afterward where I need to rest. It is a non-negotiable part of my life.
How I’m Coping
This disease has looked different at different times of my life. The past decade has been a more consistent period and has allowed me to adjust how I cope and live with this illness on a daily basis. There are three areas that I have to tend to in various ways to ensure I’m able to function.
There are two main areas that I give attention to. Physically, I ensure I always have time to rest and seek a calm life. I sleep in as late as my body needs every day. This generally means sleeping until at least 11am. I make sure to have a protein-heavy breakfast (at lunch time, of course) every day, and a generally healthy, well rounded diet. I only eat 2 main meals a day, as an attempt to maintain my weight with my limitations. I rarely take naps, so they don’t interfere with the restorative rest I need at night. From time to time I will lay down in bed to rest, but I generally do not sleep.
I’ve done, and continue to do a lot of internal work along side this illness. I’ve learned to accept this illness for what it is, and all that goes with it. I’ve needed to be more gracious with myself when I’m unable to do things I thought I could do and wanted to do. I’ve processed through a lot of shame this illness carries with it. Shame around what I’m able to do, how others view me, and how I view myself. There is probably (definitely) more, but my emotional boundaries are telling me I need to stop, both to reserve energy, as well as to finish writing this.
Me & Paul
There are certain things that we do as a couple, and sacrifices Paul makes so that I am able to live a productive life. These things may not seem groundbreaking, but without them as it stands now, my health would start to unravel. We live a fairly flexible lifestyle when it comes to work and timelines. We laugh a lot. We have an emotionally balanced relationship (in 16 years together, we’ve never had a blow-out argument). We share the load in the general work of living (cleaning, cooking, grocery-getting). We choose to have a walkable lifestyle. This makes frequent low-impact exercise (walking) a part of our daily/weekly rhythms.
Me & Vocation
When I have meetings or need to travel, there are more variables at play that I need to plan for. When I travel, I have to assume the first several hours, or the first day, I won’t be able to do much. For example, we took the train from Paris to London a couple years ago. This meant walking to the train station, sitting on the train for 2 hours, and walking to our hotel. This caused me to need to spend the rest of the day in our hotel room, only going out for dinner across the street. The other big variable is people. I love people, and the relationships I have. But I’ve learned that simply being around people takes physical energy from me – even if those people aren’t asking anything of me. I plan pre and post recovery times whenever I have a work meeting or social engagement. This means that prior to the event I have to have down-time to avoid depleting my energy before I even get there. This gives me the best chance of being mentally and physically present. I also plan down-time after the event to recover. I will almost never plan back-to-back meetings or events, as my health simply cannot handle it. Even with this, I often need to cancel or reschedule last minute. It can be unpredictable, even for me.
This illness is invisible to most people. They see me “doing” all the normal things (albeit at a fraction of someone without this illness), but they don’t see the hidden part. The part that requires me to be in bed for 10+ hours per night, or the part that keeps me in bed for a full day every so often, or the part that doesn’t allow me to do things I once enjoyed because it would be damaging to my health.
I’ve always been a night-person, but what people see is me staying up late, when I “should” be sleeping. The invisible part they don’t see is that I’ve tried countless times over the years to shift my sleep schedule to go to bed by 9 or 10pm so I can wake up at a “normal” time, and appear normal to people (mostly for them.) They don’t see me lying in bed for hours on end, staring at the ceiling, or in a weird in-between state of “almost sleeping” for hours (not restful), that causes me to wake up in the morning feeling worse than when I went to bed.
So I listen to my body. I trust my body and what it needs.
Other times people see me posting beautiful pictures of the city I live in and tell me how wonderful it must be to always be out in such a beautiful city. The invisible part they don’t see behind that one posted picture is: that may have been the only time I was physically able to leave my apartment in days. And because of my love of, and education in art, I post photos I’ve taken that I like. It’s an outlet for me, when I don’t have the energy to drag out my painting supplies, come up with something to create, spend time mentally and physically creating it, clean up, pack up, and put it all back. Instead, I walk slowly through the city on my way to and from running errands, stopping frequently to take a photo (& physical) break, because I need to appreciate the sunset right now, because it may be weeks until I see one again.
Another invisible aspect I haven’t shared with you yet are the relational dynamics that I’ve lived through with this illness. Friends disappearing because they don’t know how to deal with what you’re going through. People telling you they have the thing that will cure you. People challenging or doubting your faith because you have an illness and aren’t healthy. People gaslighting you, making you question your own sanity. People judging you or even trying to control you because you’re doing something they think you shouldn’t, in the name of helping. This experience is something so many people have when faced with an unfamiliar condition. Especially when symptoms are not visible. My husband has lived with depression for about the same amount of time I’ve been sick and has experienced very similar things for years.
So why have I shared all this with you?
First, my greatest hope is that by sharing a part of my experience, there may be someone out there that gains just a little bit more consideration in the unknowns of what others may be going through, seen or unseen. That there would be growing empathy for those with chronic conditions. That we would know that there are likely many more people like me, more than we may realize in our respective communities, that need to or choose to stay silent on what they’re going through. That we wouldn’t project on them and what we think they need. That instead of offering unsolicited opinions or advice to someone, we would realize it can actually be damaging to their health. That we would believe people when they tell us what they’re going through.
That we would believe them.
Secondly, I feel a growing need to bring a bit of awareness to this ME/CFS – something millions live with, but most don’t see. To bring it into the light, and help people understand what it can be like living with this, and other chronic conditions.
Thirdly, I wrote this to have something to share with friends and colleagues. I don’t look sick from the outside. It is confusing for others when I need to reschedule appointments, block out my mornings, and sometimes can’t socialize when and how I would like to. So if you’re wondering how to treat me, here you go:
- Ask questions if you want to know more – I’m open.
- Believe me when I give you an answer (even the answers you may not understand).
- Trust me.
- Respect the boundaries I have.
- Don’t pity me.
- Don’t give me medical advice.
- Don’t treat me like a child and assume you know what’s best for me.
Or, ya know…treat me like anyone would like to be treated.
Finally, I don’t plan to make this the focus of much of my writing. Rather, I share this so that it opens the door of communication, and maybe challenges you to think of the “other” among you, and challenge you to think of the fact that we are all approaching life through a different lenses. And each of those perspectives is so different and beautiful in its own way.