Those of us who have chronic illnesses have to carry a lot, but one of the hardest burdens we have to bear is guilt. There is so much I feel guilty about: The amount my wife has to do for me, how little I can do for her, what I miss out on with my son, the experiences he won’t have, that I am not living up to my full potential – the list goes on and on. Guilt doesn’t just turn up on its own either, it comes with emotions such anger, self-loathing, resentment, fear and despair just to name a few. At times I am overwhelmed. I feel like I am drowning.
Guilt, and fear of guilt are powerful motivators. Recently I was playing with my son. I was so tired and sore, I really should have rested but I rationalised that my pain would be temporary but his memories would last much longer. On that occasion I was right, however, the danger is that I set a precedent, I repeat this too often and cause myself significant harm. I have to be more disciplined and to be prepared to disappoint others and myself. I have to find a way to beat guilt or it is going to beat me.
Looking back on the last few months I see patterns emerging where guilt was a factor. I knew what I should do and what I was capable of and yet all too often either I would push myself too far or I resented having to hold off doing something I loved. Neither were good options and, if I am honest, I hated myself for being less of a man, less of a husband, colleague, friend, son, brother, and dad. I would waste so much energy on beating myself up for doing, or not doing something, that I felt even worse. The whole thing was a horrible, self-perpetuating circle of pain.
Earlier I mentioned that it felt like I was drowning. I came fairly close to drowning several years ago. I was cliff jumping with friends. We were having a great time and my confidence was growing with each jump until I decided to go for the “big one”. I leaped off the cliff but hit the water with my legs bent. The impact smashed my knees into my chest winding me badly. I was at least 3 metres underwater, had no air in my lungs and couldn’t move. Eventually, I floated to the surface but being so winded I still couldn’t breathe, shout or move. Thankfully one of the party saw I was in trouble, waded into the water, grabbed me and pulled me to safety.
I feel I need a similar response now. I need that arm around me, to be guided to shore, to know I will be ok and that help, practical help, is at hand. It stands to reason that if someone is drowning you need to rescue them. Standing on the side shouting “you’ll be fine” or “it’s not as bad as you think” is of no use. In fact, it makes things worse. The same, I feel, is true of ME/CFS or any other chronic illness for that matter whether it is depression, Crone’s disease, diabetes or cancer. In a lot of ways, I would argue the same for those experiencing grief too. If you want to help you need to understand that person’s perspective, you need to get into the cold, dark water with them, hold them, reassure them and gently guide them out.
How then do I get someone to come into the water with me? How can I let people know that this invisible illness is affecting me in a manner that they can’t see? Well, I guess I need to shout for help, I need to explain what’s wrong and what can be done to rescue me. Having enough air in my lungs isn’t the problem this time, I can shout no problem at all. The challenge is overcoming fear, embarrassment, and shame.
I think a lot of guilt comes from me judging myself based on my standards before I became ill. This is compounded by me feeling others don’t understand this condition and I feel that to be guilt free I have to change my perception and other peoples’. The thing is I look pretty well most of the time, and we naturally take things at face value. If I am out of the house it is because I feel reasonable. When I feel bad I hide away. I am actually writing this in bed because I feel horrific today, but no one will see this. I wear a medical bracelet (and I would encourage all those with ME/CFS to do likewise), not only does this bring peace of mind should anything happen but I feel it lets others see that despite what it seems I might not be ok. Or at the very least explain why I walk like I’m drunk sometimes, or that I slur my words, or can’t remember what I am doing, or suddenly stop and grimace in pain.
In a lot of ways I wish I could wear a top or carry a sign detailing my symptoms so everyone could see what’s wrong and ease my feelings of guilt as their and my expectations of what I am capable of are reduced. This, of course, is fantasy but I do have this platform open to me.
So here it is: I feel pathetic a lot of the time. I struggle to do things most people barely give a second thought to. Going into a shop is a big deal. Loud noises panic me and cause me pain. Having a shower exhausts me. Reading makes me nauseous. I have constant pain all over my body. I often get dressed sitting down and slowly. I feel like I am going to fall over all the time. I am scared to meet people, people I know well because I forget their names. I am frightened my son will think I am dull, lazy and boring. I am terrified my wife will see me as a burden. I’m scared of waking up every night in pain. I am sickened of being constantly tired. I am so jealous that everyone else’s lives continue while mine is on hold indefinitely. I am tired, so tired, of feeling the world doesn’t understand and I have to continually justify my position, a positon I did not want nor choose.
But things will change and I can make things change. Just writing and publishing this is a force for change. Challenging ignorance will make all our lives easier. Everyone has their own burdens which they can share if they wish and if they were received with compassion, empathy and understanding the world will be a better place.
From now on I will go easy on myself, I will be honest with myself and those around me. As my wife recently said, and I love this, “sometimes making hay while the sun shines involves sitting patiently waiting for the grass to dry.”
I am not a person who has ME/CFS who should be doing better. I am doing my best despite having ME/CFS.