Support and Acceptance in the M.E. Community
Earlier this month, an M.E. related item appeared in the news which resulted in a heated debate. The global M.E. community is united and strong, yet at times it can be surprisingly hostile. Support and acceptance are vital aspects of managing chronic illness, but with the challenges of a new year dawning, it’s important to remind ourselves of this all the more. M.E. Support Ambassador Rochelle Hanslow followed the discussion, and she now approaches the subject in a more neutral way.
One of the main things that upset and discouraged me about this article is that it showed there is a deep rift between people in the M.E. community, and I have always been baffled why this happens. Everyone has their own opinions in life and not everyone will share the same sentiments, and that is of course just a given. However, when it comes to chronic illnesses, we are all battling against the odds and this should encourage us all to support and accept each other. The article has provoked a lot of debate, especially about employment and living with M.E, with many people who do manage to work and balance their illness telling people like the lady in question to get a job. I saw one lady comment on the article saying, “I work 25 hours a week, reduced from 40; I can get myself out of bed and work, so can she.” I have to say this comment left me aghast: I truly looked at the comment and read it over quite a few times. If this is the attitude between each other, is there any wonder that we have such difficulty being taken seriously by the media and medical profession? The media already represent M.E. in such misleading ways and it truly sets back all the hard work that M.E. organisations, such as M.E. Support, are doing to gain more acceptance and understanding. We all know the stigma we face, especially in the medical profession, and the battle rages on, but if we can’t find acceptance and support amongst each other, what hope do we have elsewhere?
There are keys things to remember about this illness:
- We are all at different stages of our journey: some are just starting diagnosis and some are already years deep. No matter where you stand in the M.E. Disability Scale, from mild to severe, remember someone with mild M.E. may be more able day to day or after crashes compared with someone bedbound with severe M.E. It is important not judge others according to your own personal stage.
- This illness is so complicated; even though we all have the same diagnosis, we don’t all share the exact same symptoms and at the exact same rate. Some of us get other chronic illnesses that come hand in hand with M.E., others don’t. There is no right or wrong with this illness; whether you can maintain your activity and life or whether you are bedbound, it doesn’t make either stage wrong.
- Stemming from point 2, treatments can also vary from person to person. Cognitive Behavioural Therapy, for example, has never helped me personally, but I know a lot of people who have had great success with it and found it the best treatment for them. There is a lot of trial and error with this illness and you can’t write off someone’s suffering or experience just because something they have tried that didn’t work did work for you and vice-versa.
Another main point that needs to be made to all in the M.E. community is that employment and chronic illness is a minefield: some manage to work the same job with their illness, some manage at reduced hours and some just can’t manage work at all. Whatever bracket you fit into, it doesn’t mean you are more superior than anyone else. I want to really stress that this is not an “us and them” situation; we are all in the same boat with an unrelenting illness that constantly tries to make us sink, regardless of who we are and what we do in our lives. An obvious issue that is very often completely overlooked is that if you haven’t been able to work with this illness but find yourself now improving or find yourself struggling for money due to the benefit process being so unrelenting, the employment climate today is difficult even for the healthiest of people. My husband found himself redundant in 2015 and it took over 18 months for him to find employment again; he applied for jobs daily, with a good majority of them not even bothering to reply, which was soul-destroying. There are hundreds of people finding themselves in the same position, so many applying for the same job, and as an employer in today’s climate you want to know that the people you hire will be committed and up to all the tasks every day; someone with chronic illness who is experienced for the job may not be able to provide that kind of commitment, so it is easier to hire someone who is less experienced but whose health isn’t going to let the company down. There are many companies who are “Equal Opportunity” employers of course, but even they have so many applicants that the same reasoning stands.
If you would like advice on working with M.E., please read Myalgic Encephalomyelitis in the Workplace or Working from Home with Myalgic Encephalomyelitis. If you need some financial advice, or you’re having a difficult time with applying for benefits, please read Louise’s useful Money Matters article, which includes lots of helpful resources.
I am a proud ambassador for M.E. support. Louise has strived for almost 17 years to give M.E. sufferers a place to not only ask questions and get advice, but to find support and understanding with likeminded people and it truly upsets me when the M.E. community scrutinises each other just as much as the media and medical professions. We need to stick together, and share our stories and experiences without jealousy or judgment of others; we are all fellow “Spoonies” and we all know how much this illness can take away from us.