Greg and Linda Crowhurst posted this on the internet today (9 February 2010)
From time to time, the ME Association website publishes personal accounts about ME/CFS which we call ME Perspectives. This one is certainly very powerful. To read the others – only four so far, including this one by the Crowhursts – type ‘MEPerspective' (no gap between words) into our search box.
1 The relationship between you and the person with severe ME, must be be a priority in your life. You may be caring for decades, as there is currently no treatment, no cure and limited validation.
2 You need to understand the illness , what it is and how it affects the person.
3 This is going to take time; it will not happen overnight. Tt may take years, even to identify the symptoms and understand their impact.
4 It is going to be painful, as you try and understand the complexity of severe ME and its bizarre nature ; in relation to you as a carer, trying to help the person and the impact it has upon your lives.
5 The person with severe ME is not living in the same experience of the world as you are; this is so hard to understand and to deal with.
6 You are most likely going to have to work this out alone.
7 Until you understand it, can cope with it, know how to deal with it,know how to maintain your relationship, despite difficult interactions, you will not be able to convey the severity and effect of severe ME to family, friends, professionals.
8 You are going to experience isolation from normal things because the person with severe ME cannot do normal things.If you stand by their side, your life wil become more limited too.
9 You are going to enter into some of the aspects of the person's experience; the disbelief, the disappointment, the negativity, the misunderstanding, the misinterpretation, the rejection.
10 You are going to have to become aware politically of what is going on, in order to survive.
11 You are going to have to fight your corner and the person's corner, even to get basic needs met.
12 You will have to become an advocate for yourself and the other personbecause it is a poorly understood illness, often treated as a psychiatric illness rather than a true neurological, multisystem, dysfunctional disease.
13 You really cannot assume that you are going to get the understanding, the acceptance, the medical and social support from family and friends that you would expect and should be entitled to and would get with any other illness.
14 If you are going to be the main carer for the person with severe ME, you have to make the choice between work and poverty and quality of life and your relationship with the person.
15 These are big decisions that have a huge impact upon the person and they result in losses that need grieving and understanding. Most importantly they need accepting.
16 You need to accept the choices you make and look for the benefits you gain in loving and caring for that person.
17 The person with severe ME is not going to fit into standard procedures and practices, do not expect that it is going to be easy and expect that formal agencies are going to reach out and comprehend.
18 There is a tendency, on behalf of professionals and well meaning others to be quite divisive and to “client-ise” patients and carers, rather than offer a holistic approach and understanding to what their need is.
19 Do not give your power away to social workers, nurses, doctors, anybody. You work, live with the person, you do know better and trust has to be earned.
20 You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life and how to be empowered.