Coach and Trainer Simon Pimenta talks about the challenges of caring for someone who has ME/Chronic Fatigue Syndrome, Fibromyalgia or Glandular Fever and how you can help them.
This article comes with a warning! The following information may be unsettling. Please do not read on if you are a defensive person, who is not prepared to look honestly at yourself. However, if you are big enough and open to looking at yourself, and genuinely want to help the person with the above conditions, then read on.
If you are a carer, or have someone close to you who is debilitated by the condition ME/CFS, fibromyalgia or glandular fever, it is understandable that you are concerned about their health and lack of activity. However you need to understand that they are doing their best. Dealing with this condition is very challenging to deal with for a number of reasons:
- No Doctor they have met fully understands the condition, or has told them how to get well.
- They don’t understand the condition themselves.
- It is difficult for others to understand the condition. Some people believe that it’s all in their head. This is very upsetting for someone who is unwell and doesn’t want to be lying in bed all day.
- Any stress can leave them feeling worse than they already are.
So how can you deal with this situation, where someone you care about is so unwell? If you really want to help person then consider the following:
1. Use The 5 Magic Words
Ask them to the following question:
How can I help you?
2. Listen
Listen to the answer. Really listen. Try and put yourself in their shoes. Having this condition is like having constant flu, a hangover and having weights tied to your arms and legs. How would you cope with that?
3. Take Positive Action
Consider how you can put the answer that they give you into practice. Not just for the next five minutes, or for the next hour, but from this point onwards.
4. Manage Your Own Emotions
It is important that you don’t add to their stress. That is challenging, as you may have concerns about their lack of progress or deterioration in their condition. However, adding to their stress isn’t going to help them. This ill person has not got the resources to deal with your anxiety about them.
Some people project their own stress, frustration and unhappiness on the sick person, rather than dealing with their own issues and sorting their own unhappiness and stress. If necessary, you need to get help to help you manage your emotions. Let me repeat that. If necessary you need to get help to help you manage your emotions. Find a Counsellor, a support group, a friend who is a good listener, or someone experienced in working with people with ME/CFS.
It takes a courageous person to admit their own flaws and shortcomings, and take steps to address them. If you are one of these people, look at getting your own house in order. Finding a good therapist and dealing with your ‘stuff’ is a liberating process, that results in people feeling better about themselves and better equipped to help others.
5. Get Permission
If you have got something you want to share with them; a suggestion, or a question, then ask them: “Is it okay for me to ask you a question/make a suggestion?” Tell them that you don’t want to upset them or add to the burden, simply that you have got some thoughts that you want to share. When you share your thoughts in a calm manner, as a question rather than an accusation “Why don’t you exercise more?”, then they are more likely to hear it.
6. Recognise You Are Can’t Fix Them
Understand that there are many people, including doctors, who do not know how to help this person, so don’t put it upon yourself to think that you necessarily have the answers to their problems.
7. Become A Better Listener
If they are telling you that what you are saying or doing is not helping them, then you need to change your behaviour.
8. Clarify Your Message
Through your words and actions, you are giving this person a message. It may be “I don’t trust you”, “You’re doing it all wrong”, “If I were ill, I would do it differently”. Is this a message that you have given them over and over, even perhaps before they were ill?
The message that would be more useful is that you have faith that they will find a way out of this, and that you will do your best to support them on their journey. The best thing that you can say is “I am happy to help you in any way that I can, and I am happy to be guided by you. I’m happy for you to tell me what you need in order to get well”. If you find this difficult, reread point 4. Manage Your Own Emotions
You could also say to them “I believe in you. I believe that you have the resources within you to find a way out of this”. Here is the thing. If you are not communicating this to them, what are you conveying?
As I said earlier, the information in this article may be unsettling. However, if you really genuinely care and want to help the person who has this condition, take note of the above. If this article has made you feel uncomfortable, Don’t beat yourself up. If notice that you are feeling angry, then recognise that that may be a defensive response; some people get angry when someone points out a truth that we’re don’t want to look at. HOWEVER, dealing with it will only bring benefits in the long term. If this article has stirred feelings, feel free to contact me for a free consultation.
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SIMON PIMENTA is a hypnotherapist, coach and trainer working with people to boost resilience and performance, and minimise stress. After working in a demanding job as the Director of a Housing Trust, he went off sick and remained unable to work for the next 8 years. He discovered a pioneering approach to resolving health issues and quickly got back his health, and now trains others using these same techniques, to help them become happier, healthier and achieve their goals.