Coping with the diagnosis
To mark our 100th issue, we present our 100 all-time top tips from InterAction contributors! These first 15 tips focus on how to cope when you have been diagnosed with M.E.
1. “If someone told me they or their child had just been diagnosed with M.E., I would tell them to reach out for help as soon as they can. The help is there – make sure you ask for it.” Helen, InterAction 98, p 19
2. “The hardest part, if you’ve been really active, is accepting you can’t do what you used to do. Once you get your head around this, it’s a big step in living some sort of life again.” Nigel Brown, InterAction 99, p 44
3. “Be both realistic and optimistic. The chances are that some degree of recovery will almost certainly occur, although full recovery may not be possible.” Dr Charles Shepherd, InterAction 72, p 22
4. “Learn about pacing. Above all give yourself time.” Moya Quick, InterAction 68, p 17
5. “Take full responsibility for and towards yourself, giving yourself the TLC needed, and trying not to dwell on what you’re being deprived of.” Christine Bewley, InterAction 9, p 49
6. “My advice is that it is necessary to drastically challenge the life you lived before M.E. Seek the happy things and avoid the people who doubt you.” Elizabeth Purves, InterAction 86, p 43
7. “You are not alone. There are people out there you can talk to.” Toni Mason, InterAction 68, p 17
8. “Shop around for a sympathetic doctor. Your doctor is your best friend when it comes to ‘backing you up’ with regard to your illness, benefits and the help you need.” Kay, InterAction 69, p 36
9. “Hang in there. There is life after M.E.” Richard Easthorpe, InterAction 77, p 42
Education, employment and benefits
M.E. can have a big impact on many areas of your life, including your education, employment and finances. Here is a selection of our favourite tips for managing these issues.
10. “Contact disability support at your university and arrange a meeting. Also, look for disability groups at your university. Make use of any available tools and software that can help you manage your studies.” Lorna Reeve, InterAction 99, p 30
11. “Take your time filling in any forms about your disability needs: think about all the things you might require and mention them even if you’re not sure.” Simon, InterAction 81, p 29
12. “Put your health before wealth. No job, no matter how satisfying or well paid, is worth risking a relapse for.” Stuart, InterAction 44, p 14
13. “Rushing back to work tends to be a recipe for disaster. Be realistic about your limitations. In ideal circumstances, the transition should be made slowly and paced carefully. It may not be easy but it can be done!” Janice Benning, InterAction 44, p 14
Applying for welfare benefits
14. “Make sure you keep a digital copy or photocopy [of your claims form], just in case they claim it doesn’t reach them by post or on time and so that you can refer back to it before any assessment.” Glen Buchanan, InterAction 95, p 12
15. “I hadn’t realised how much I’d adapted, so I wasn’t explaining that [on the form]. So if you do something in a different way from healthy people in order to get it done, that effectively counts as an adaptation or an aid.” Emily Beardall, InterAction 95, p 12
If you have been diagnosed with M.E., we have resources that could help you. Our Newly diagnosed with M.E./CFS booklet can be downloaded from www.actionforme.org.uk/newly-diagnosed, or you can call us for a paper copy.