Last month I was diagnosed with ME/CFS, which stands for myalgic encephalomyelitis/chronic fatigue syndrome. I don’t know how long I have been ill for, but certainly the past 18 months at least, if not the last few years. I struggle to describe the full extent of the impact that this illness and the diagnosis of it is having on me, so if you are part of my life in any way, or the part of someone else’s life with ME/CFS, here are 6 things that I want you to know about my illness:
1. It’s not just about feeling tired
My symptoms include fatigue (well, duh!), feeling dizzy/faint, chest heaviness/tightness/aching, heart palpitations, nausea, sensitivity to stimuli, super sore shoulders, pain radiating from my spine, memory loss, chest pains, flu-like symptoms, losing track of my thoughts, forgetting words, forgetfulness in general, and non-restoring sleep; which means it doesn’t matter how long I’ve slept, I still feel like I need to sleep more. I also have exercise intolerance, experiencing what is called post-exertional malaise. It means that my body completely crashes about 24hrs after doing aerobic exercise, and therefore I have had to stop doing this (not an easy decision, I might add). In addition, I have what’s called orthostatic intolerance, which means that when I have symptoms, they worsen upon standing or sitting upright, and get better when I lie down again. ME also overlaps with a few illnesses, two of which I experience: IBS, and endometriosis. The fatigue is also not just feeling tired. It’s not even feeling really tired. It feels like my body has been poisoned. It feels like my body is made of stone. It feels like I am wading through mud when I try to do anything. My chest feels like there is a dead weight on it. It feels like it has clenched up, and it’s like breathing is even too much energy to do.
2. I can’t just push through it
ME/CFS is incurable and treatment is only in respect to symptom management. ME affects an estimate 20 million people worldwide. 25% of sufferers are severely affected and become house or bed bound within their lifetime. This can happen just because it happens, or it can occur because lots of people try to push through their symptoms, and often decline, pushing themselves past the point of no return. I feel scared that this will happen to me; it COULD happen to me. I sometimes don’t take it seriously enough because I am one of the lucky ones who can still work (albeit part-time, but most people with ME cannot work at all), and I often still do things because I want to, even when experiencing mild symptoms. This can mean that I pay later, and I’m just starting to realise that I need to start saying “no” to doing things, even when I want to. My symptoms will not go away if I push through them – they will get worse.
3. I’m not just being lazy
It’s an illness with a hell of a lot of stigma surrounding it. People just think you’re “being lazy”. A lot of people have not heard of it. Some people don’t understand because they see you on your good days – when you are able to get out and about – and so they think that you appear to be fine, so you must be fine. They don’t see you on the days that you cannot get out of bed or remain on the couch all day; when walking up steps feels like climbing a mountain. Just because you can do one thing one day, does not mean that you can do that thing again the next day. Just because I’m not telling you I have symptoms, doesn’t mean that I am not. I might look fine but I feel uncomfortable, embarrassed, ashamed, and anxious about your reaction if I tell you. My symptoms are not just something I can ignore, push through, and get over. Before I knew what was wrong, I have found myself in hospital because I felt that something was seriously not right, and it felt like my body was shutting down. If you don’t have ME (or another chronic illness with similar symptoms), you do not know what this feels like, and you cannot even imagine it. My legs might not fall off when I feel unwell; I might not develop a terrible rash; I won’t collapse (hopefully) or be unable to breath; I won’t bleed from every orifice or break out in bruises; I may look physical fine, but sometimes I’m really, really not. You just can’t see it because it is all internal.
4. I am terrified about how this will impact my life
I don’t feel secure in any aspect of my life right now.
I am afraid that my health will decline further. I am worried about my financial situation (I have had to lower my hours to 22.5hrs a week). I am concerned that I will not be adequately supported at work. I am anxious that the financial, physical, and emotional responsibility will be too much for my partner and he might end up leaving me. I wonder if this feeling of being a burden will end. Will my friends become frustrated with my inability to completely commit to any social event or my inability to drive much? Will they think that coming to mine 90% of the time is because I can’t be bothered to make the effort? Will people think that I use my diagnosis as an excuse to be lazy, or to shirk my responsibilities and duties? Will I lose myself to this illness? Will I lose my job? Will I ever be able to save money? Is my life going to be substandard? Am I going to be okay? I am inundated with anxieties about how my life might turn out, and that’s going to take a while to work through.
5. The emotional impact is palpable
Because of all the questions and anxieties that I have, the emotional strain is pretty immense. I feel stressed about all the ways in which ME could impact my life. I am anxious. I can sometimes feel depressed. I feel guilty about not being able to provide the same level of physical effort in my friendships (driving/walking/transporting myself to somewhere that isn’t my own home). I feel guilty when I ask my partner to do things I feel I should be doing. I feel pressure to hide my symptoms/not say when I am experiencing them. I am frustrated with my body. I am afraid for my future. I am angry because this feels unfair. I sometimes feel hopeless, because there is no way to treat this, and there is no cure. Processing this information, and these emotions that come with it, is difficult, and overwhelming.
6. I am worried about what you think about me
This was touched upon in some of the other paragraphs above, but this is one of my most prominent anxieties. Some of these anxieties will be well founded, and some of them will be a reflection of my own insecurities. As I mentioned before, there is a lot of stigma around ME/CFS, and this means that there are going to be people that treat me as if I am making this illness up, being lazy, or exaggerating. There will be people who do not understand the severity of ME and what effect it has on your ability to live life normally, as well as just how terrible you feel if you are experiencing symptoms, especially as those symptoms increase in severity. This is exactly what worries me: that those in my life will become exasperated and irritated by the fact that my needs are going to be different from theirs. That people might not realise that the effort I make to even be in the company of my friends costs me energy that I have little of, and so even though my effort might appear to be less, it’s not. Even if you, as one of my friends, have to nearly always drive/walk over to mine – which will get annoying, I know – my effort is in the energy that it takes me to even hang out. I am worried that my colleagues won’t understand that sometimes I am going to need to do a little less physical work some days. I am worried about how self-conscious I feel disclosing if I am having symptoms because I do not want to feel useless, or be a pain in the ass. I don’t want people to add me to their list of worries, so if I do let you know that I am experiencing symptoms, it is not because I want you to worry, but that I want you to understand that I may have to do less/leave/cancel. I am anxious that I will be perceived as a bit of a useless lump, to be honest. I guess I just want people to understand that my effort will (nearly) always be 100%, but that I will have less to show for it. You will often be able to do a lot more with 100% effort than I will. But most importantly, I want you all to know how much I value you, and how much I value your company, and how much I value my job, and how much I value all of the things that I have in my life. And I want you to know that I will always try my hardest.