Thursday 9 February 2023

When Family & Friends Do Not Want to Understand Myalgic Encephalomyelitis (ME), or Deny it Exists or Do Not Support the Person with ME



We Believe You & We Support You

It is hard enough dealing with this illness on your own, but even more so when those close to you struggle to even recognise that what you are going through is real. We can feel dismissed and disbelieved, while at the same time, also blamed for it. We can eventually start doubting every aspect of our being and sense of self.


Lack of support can take various forms, including others not believing that we are ill and not understanding the severity of the limits imposed by ME. It could be down to people just fundamentally not being able to put themselves in your shoes…you have to have experienced it to truly understand it.


Having ME may make you feel more vulnerable to those who are negative or demanding. The cost to your health of spending time with such people may be great enough to convince you that some relationships are not worth maintaining. You may decide to keep close to some people and others you may consider essential in your life but the cost of spending time with certain people may be great enough to convince you that some relationships are not worth maintaining. So, simplify the relationships that are necessary but may be unrewarding, and eliminate the ones that are unnecessary and unrewarding. How? Limit contact with relatives in the immediate and extended family who prove unsympathetic, unhelpful and cause stress and anxiety.



Educating Others

If you think educating others about your condition would make them more understanding or supportive, you might talk with them or give them something to read. One can deal with their family's lack of understanding by repeatedly reminding them of your limits.

Educating others about ME often requires time, energy and great patience and is not always successful. Most who try eventually put limits on their efforts to educate others, focusing on the relationships that are most important and recognizing that some people may never understand or be sympathetic.

Another solution is to set limits, by making clear what you would and would not do, what you can and cannot do so that family allow you to pace yourself where possible.

Developing new sources of support is another way to handle lack of understanding from family. Such support can come from medical professionals, such as your GP or consultant. You could bring a family member to a future consultation having previously asked the doctor to explain to them about how difficult your illness is, to explain a little about the illness and the debilitating symptoms you have, and how the family member can support you. Sometimes family members understand the severity of ME if they hear about it from an professional figure such as a doctor.


If you have heard “there is nothing wrong with you,” or “everyone gets tired”, etc or your family just don’t support you at all please don’t give up. We believe you. We know this is real and there are many others you will meet on support groups who know too. There are a few things you can do to overcome this; the most obvious step is to educate.




Educational Materials

Here is a list of educational materials you could use to educate family members and friends about your illness.



·      Dialogues For a Neglected Illness Films (UK) are useful for providing information to ME- unaware medics and family members, get them to look at the films about Introduction to ME and Severe ME in particular and the one on Activity and Energy Management – Pacing, and the films on PEM via link here:





·       Symptom & Severity Questionnaire & PEM Questionnaire (De Paul US), Bells Disability Scale, International Consensus Criteria & Primer may be of use to you, in particular the Symptom & PEM Questionnaire based  on research. You may be too unwell to complete those but they could be completed over time or you could be helped to complete them, and they could be very useful to show family and friends your symptoms and to educate others about your illness. Certified completed questionnaires, i.e. ones signed by your doctor would add more weight to the reality of your situation. Please access all those above-mentioned documents here:


·       Emerge (Australia) put together this guide to help others understand what someone with ME may be experiencing, and to provide some tips to help support them to stay connected:



   ME Crash Survival Guide by Bateman Horne Centre (US) has some content which may be of use to you to educate family members, pg 11 ‘Turn Down the Volume & Allow Recovery’ is particularly useful, see that via link here:

 (NB: The content in the survival guide above is for information purposes only, please consult with your doctor before introducing anything new into your management regime, e.g. don’t introduce any new medicines or supplements without checking with your doctor first, e.g. the guidance on crash management refers to electrolyte drinks, salt & sodium, however if you have an undiagnosed rare condition it may be dangerous)


Community Services (Ireland only)

A person living alone, and a person living with others who has zero support, may be entitled to supports and services for people who need support in the home to help them keep independent.. Please see more about that below.

 Tip: When you see the line 'Information on our Home Support Services for people aged over 65' or 'Home Support services for Older People' please ignore, there is no obvious policy available for those under 65....decisions are made about those under 65 who have disabilities are at the discretion of the Public Health Nurse.

Disability Services

Disability Services would be the go-to service but not a self-referral as you’ll just be dismissed, get a GP referral if the GP is on board.

More via the HSE link but nothing specific for under 65s so it’s worth going via the GP to find out more. There’s a link to Disability Services in your county, under the Related Links section, see here:




Home Support Services

The HSE provides Personal Assistants and Home Support Services as well as Respite Services and Therapeutic Supports, and Aids and Appliances, that are designed to enable people to live as independently as possible. The Home Support Service is free.

Services are provided on the basis of assessed need, rather than diagnosis, and take into account the individualised requirements of people. The support you will receive depends on your individual needs, these will be identified during the Care Needs Assessment.

Please see if there is anything that might help you on our blog post entitled ‘Public and Community Supports’ which includes information about Home Support Services and more. Go to the various headings to find the various services which may be relevant to your circumstances, seeall that information via link here:

Alternatively, go directly to the HSE information re Home Support Services here & here


It may be easier to chat to your Local Home Support Office to find out how they can help you, here’s the link to find your local office:




Obtaining Mobility Aids & Appliances via HSE or private purchase/rent - Mobility Scooters, Powered Wheelchairs & more to support you to live independently inside and outside your home - please see full post here

You sent





·       There is a lack of HSE policy for under 65s, but those under 65 will be assessed according to their needs. You may see that most Home Care packages refer to over 65s, but please persevere and apply for what you need despite that. 

        The page about the Home Support Service explains how HSE provides help and support with everyday tasks to older people living at home and they include tasks that are specifically for people over 65 which you may not want. It would be a good idea to create a list of your actual care needs and stress that they are needs that you must have supported to be able to remain living in your own home. We have notes on 'My Needs' here

·       Specific national policy relating to disability services from which local disability service policies, and the national policy/guidance which CHOs rely on to write their own local policies derive are difficult to obtain as they likely do not exist.


If you have questions about ME or ME supports that haven't been answered please contact us by email at or via the messenger button on our facebook page You may also find information on what you are looking for in one of our other blog posts.

Thanks to Emerge Australia, Bateman Horne Centre US, Leonord Jason (US), Dialogues for a Neglected Illness -Natalie Bolton & Josh Biggs (UK) for some of your work we have included above.





How we usually refer to Myalgic Encephalomyelitis (ME) & aspects of ME

 i. There are some aspects of advocacy and education in other countries that we may not promote that you may see on the various websites we have mentioned in this post, i.e., what other ME organisations say, or the terminology they use, because aspects of ME may be viewed differently in different countries, and because some aspects just may not be suitable or appropriate to an Irish ME context. However, we hope that the pages we have shared which we think are helpful will help you.

ii. We tend to use and encourage use of the ME label only for various reasons, too many to mention here, but we recognise and appreciate that others use the CFS or ME/CFS label.)

iii. We tend to refer to PEM as PENE as per the ICC, you may have seen PENE used in our other posts










No comments:

Post a Comment