- Chronic Fatigue Syndrome / M.E.
- Interviews
Charlotte F's interview
How did all start?
I was a happy, active, healthy 10 year old and then I caught glandular fever. I haven't been well since and that was 25 years ago. I was first ill in the May of 1992 and still ill in December so my GP sent me to a psychiatrist because they had no idea what to do with me.
Since then I've seen a lot of counsellors and psychiatrists because I was told it was psychological. All the time I was still physically very ill but no one paid any attention to my symptoms.
Do you already have a diagnosis? How long did it take you to get it?
I got a diagnosis when I was about 18 where the GP suggested I might have CFS/ME although I think I'd known this for years.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have never found anything which has really helped me despite trying so many things over the years; homeopathy, hypnotherapy, CBT, counselling, low dose immunotherapy, vitamins and supplements, restrictive diets, reflexology, reiki, acupuncture, massage, antidepressants. That's all I can remember for now!
What has been the most useful thing for you so far?
The only things I've found that help are rest and pacing. Listening to your body, which I'm not very good at, but which I know helps.
What have been your biggest difficulties?
Learning to pace my activity which is not my normal speed is very difficult for me.
Dealing with disbelieving and sometimes rude and unhelpful GPs and other people and not having any help.
Missing out on things over the years and not being able to do the things I've wanted to do.
How has your social and family environment reacted? Have your social or family relationships changed?
My family have always been very helpful and supportive although in the early days some of them believed it was psychological. My mum has always known that my immune system was damaged by the glandular fever and has always been supportive.
What things have you stopped doing?
I've stopped swimming and walking both of which I really enjoyed.
I have stopped studying when I would've liked to get an MA in history.
I have missed out on so many things over the years. All through my school years and now.
What do you think about the future?
I don't think I will ever fully recover. I have had times when I thought maybe I'd recovered or gone into some sort of remission but it's always returned and at the moment I'm having a relapse which means I no longer work or really go out. I have some hope that biomedical research might help me in th future but there seems so much opposition and ignorance to battle through.
So far, which years have been the best years in your life? What have you done during them?
So far the best years of my life have been up to the age of 10 when I was happy and healthy and also in my late twenties and early thirties was a good time. I was relatively well, working, and with my now husband. I worked as a bookseller and as a library assistant which I loved. I got married and moved in with my husband.
What would you like to do if you didn’t have your condition?
I would like to be working or studying. I wanted to do an MA and PhD in history, especially medieval history. Or I would like to be a bookseller or library assistant again.
If you had to describe your life in a sentence, what would it be?
I keep going.
Finally, what advice would you give to a person in a similar situation?
Rest and rest and pace. Surround yourself with people who believe in you and love you. Don't give up.
