Anyone with a chronic (lasting more than three months) illness deeply understands the pervading guilt that infiltrates all aspect of your life. M.E. is no different although perhaps more so than some other illnesses. An invisible illness is invisible even to you under two circumstances – when you have a momentary flux in the right direction towards feeling healthy and when you become so used to feeling ill that you no longer recognise how ill you actually are. You can often lose the understanding that you have nothing to feel guilty for.
M.E. forums are filled with a deep sense of guilt:
1. My daughter has been home all Easter because I can’t take her out like the other mums do.
2. My house is a mess but I haven’t the energy to clean it.
3. My mum is ill and I am her primary carer, my family think I should look after her because I’m the only one who doesn’t work but some days I can barely get out of bed myself, my mum isn’t getting the care she should.
4. I’m not at work so people are having to do my work for me.
5. I no longer earn my share of the family income, I am putting financial pressure on my partner.
6. I’m living off benefits; I never thought I would do.
7. My family have to go out of their way to look after me and I find it so hard to accept.
Dealing with the emotional side of being ill can for some (including me) be the most challenging aspect. Somebody wrote the other day that we must remember that we are not just physically fatigued but also mentally fatigued. Mental fatigue means that dealing with the strong emotions that M.E. evokes is even more difficult than it would be if you were healthy.
The additional fact that so many patients are isolated from those day to day interactions that enable the gentle release of built up anger or guilt help to further instil this sense of guilt. For most patients no longer working or going to school or regular socialising has resulted in an internalising of many emotions. There is nobody to vent to regularly except perhaps your carer. Internalised emotions build up and become a debilitating factor in the illness that caused the negative emotion in the first place. It becomes a viscous circle that for some becomes impossible to escape.
As I have stated many times, I am lucky that my friends and family believe me and support me. They don’t pressurise me to do more than I do, in fact often they pressurise me to do less. For far too many however they have to deal with guilt cloaked in the understanding that their friends and family do not believe they are really ill. Some have the further battle of a doctor who doesn’t believe they are ill.
So, for these people, they not only have to fight for acceptance, treatment and the space to try and recuperate but also have to fight their own sense of guilt but without the emotional or practical support of families. As far as I am aware no survey has ever shown whether strong family support empirically enables greater recovery from this illness. Logic however would suggest this is so.
A sense of guilt makes you feel that you shouldn’t ask for help, that that job that you know you shouldn’t do, you should do. It can force you to make decisions that are ultimately detrimental to your health. Your mental fatigue however can make the decision and indeed the action in itself more emotional and therefore stressful than in reality it is. Stress displays itself in M.E. patients through poor sleep and physical pain further debilitating the patient, leading to further feelings of guilt over their perceived weakness.
Regularly the M.E. forums stress to members, that it is not their fault. They are not responsible for being ill, they are not responsible for the repercussions of this illness. They did not deliberately make themselves ill – there is no one to blame for this illness. When only you and you alone can understand your illness, when you have no clue for how long you are going to be a burden on your family, this is hard to accept.
Many M.E. patients it seems were the strivers and the ambitious people in their world. The ones who perhaps would look at others who just did enough to get by as lazy and unproductive. Faced with the reality that these ‘lazy’ people can now achieve far more than you can, it is understandable that you think you should be able to do more. If you were a significantly higher achiever in the past than those people around you, surely (if you wanted to) you could be at least as productive as everyone else now. The reality is for many this is not possible. Although you can take away the possibility of doing more, it is harder to take away the desire or instinct to do more. It is this instinct that instils this sense of guilt.
The reality is that our illness has resulted in a greater burden for our friends and family to carry. In today’s world, employees are already expected to work their socks off every day and to be a ‘good parent’ your child must eat perfectly every day while attending lots of life-affirming and skill development classes. So adding your burden does make life more difficult. It is natural that those in your life can at times get frustrated and tired and sometimes it can seem to the patient (real or perceived) that friends and family are sick of the burden.
Patients in an already weakened position must try and read between the lines: is this person expressing something they truly believe; is this person worryingly tired or stressed; or is this person simply venting. Emotionally this can be thoroughly challenging. How do you balance your need for support and care while ensuring that those around you don’t do too much themselves?
Communication is the answer. Communicating something so personal and so emotional is hard though. Trying to battle through your sense of guilt in needing the conversation in the first place means that for many this is a conversation that is avoided at all costs. Fear of insulting or upsetting those people you need most in your life can prevent you having the very conversation that keeps these relationships healthy.
Illness is often perceived as a physical ailment unless it is a clearly defined psychiatric illness. While M.E. is most definitely a physical ailment you must also protect your head. Clinical guidelines for M.E. state quite unequivocally, ‘depression is not a symptom of M.E. but can it can be a repercussion.’
M.E. patients have no reason to feel guilty, they have done nothing wrong. Easier to say than believe however – at least at times.