My Letter to People Without CFS

My Letter to People Without CFS

I used to have Beth Oberin's Fantastic "Open Letters to Normals" here but I was asked to remove it and just add a link.
Deleting this page would have made me change 40 pages and I just didn't have the energy to do this, so I wrote a letter as well.
Beth Oberin's letter is still the best on the web and you can find a link to it at the bottom of this page. Sorry for any inconvenience.

Hi: Glad you decided to read this letter. I'm writing this letter in hopes of educating not only those who do not have CFS but also those with CFS and to help explain a little of people with CFS.
I want those without CFS to understand what we feel and what we go through each day.

Living with CFS affects us in more ways than one can imagine. What we have to deal with is not just an illness, but the many people in and out of our lives who do not have proper information on CFS, who do not understand what CFS is and how it affects us.

We have to live with the many looks and questions of doctors, medical professionals and others in the Health Area. We've learned how to live with their ignorance on CFS. That should be enough...but it isn't. Then we have everyone else questioning us on whether we are ill or not.

These people can make having CFS worse than the illness already does. If a doctor told you that they had "cancer" - everyone that knew you, would be understanding and caring because to them "cancer " is a real disease. What would it feel like though if no one you knew had heard of cancer or had heard wrong information about it and didn't believe you had it? We live with this on a daily basis.

Perhaps by sharing this, people without CFS will finally understand. Every CFS site I have visited all have the same goal...to educate those who do not have CFS.
Why is this so important?

Because people without CFS can make us feel worse about ourselves than we already do. That's only the tip of the iceberg though. The 2% of the CFS people who get better makes our lives even more of a problem.

There are so many feelings that we have - you can read about all of our emotions by reading Emotions of CFS People. Because CFS is considered an "Invisible Illness" this creates many problems that most people would be unaware of. If you see someone in a wheel chair, someone with a missing limb, someone with a terminal illness, most people tend to accept these people as ill and therefore respond accordingly. But with all the invisible disabilities there are, most people do not accept or understand them. So here are some things I'd like you to know about me and the millions of other CFS sufferers.

1. I am ill and have a disability called "CFS" but this does not mean that I am immune to remarks or statements that imply that CFS is in my control. It is not. I did not ask for this (anyone who is ill never wants to be) but I must learn to live with this and to make the most out of my life. It would be easier if you would understand more about CFS and treat me as a person and not a disease or a "faker".

2. Another major factor that I deal with on a daily basis is the lack of knowledge of CFS and therefore hear all the statements that imply I would get better if I did this...or this...or this. Everyone I know with CFS gets this and it makes me sad to think that normals believe that this is in my control.
I have already tried most of the things people suggest already and so have most other CFS sufferers.
I don't want to be ill so I've tried everything I know or someone has told me that worked for them, so I and every other CFS person has tried it as well.
Don't you think that if there was a cure for CFS that all of us would find it and get better?

3. I need people just as much as anyone else, but maintaining friendships is very difficult. Most people do not like to be around someone who is ill and I can understand that, but my illness is not terminal, so understand that I still want relationships, friendships, and everything else I wanted before CFS. You can help if you learn how to be a friend to someone who is ill. Please read "How to Kill a Sick Friend" to learn what to say or do and what not to say or do.

4. Please understand that when I'm having a good day, this doesn't mean that I am well, it means exactly what it is - "One Good Day". This means that if I'm able to do some small things today, right now, I may not able to do them for long or to do anything else or to do them again on another day. This illness affects our systems so we cannot ever make plans ahead of time as we never know how we will feel on that day. I hate it when people say "You should be spontaneous". I'd love to be spontaneous...but I can't. I don't know how I'll feel in an hour from now or a week or a month. I don't even know if I'll have energy in the next 15 minutes, so being spontaneous is kinda out of the question.

5. Understand that CFS is very unpredictable. What I can do today, I may not be able to do tomorrow. This applies to everything I can do - from walking, talking etc. Also understand that since CFS is unpredictable that the plans I make today with you, may not be possible to do on that day. I don't know how I'll feel next week at 2:00 pm, but then again neither does a normal, but with a normal, your chances are way better knowing how you will feel next week, next month etc.

6. Understand that CFS affects each person differently, so if you know someone else with CFS who seems able to do more, don't compare me to them. We are all individuals and this disease affects each of us differently. We may even have the same virus (there are 3 Viruses), but it reacts differently in each of us.

7. Please do not treat me like a child. I am ill but that doesn't change who I am or who I was before CFS.
Do not try to tell me that if I do this or that, I will get well, this isn't true and I've already tried most of everything I could to try and get well and so has every other CFS person I know.

8. Please understand that I cannot do all the things I used to and if I do something one week, I may be unable to do it again. Understand that this illness fluctuates and therefore so does my health and my abilities.

9. I enjoy people with CFS because they understand me completely. This does not mean that I do not want healthy people in my life. It is only with the help of healthy people can I do things.

10. If you want to be my friend, I'd love it, but do not expect a friendship that requires a lot of energy - going shopping, to shows etc. My energy level is limited and therefore I have to save lots to feel better. Do not be disappointed if I have to cancel things I had planned to do with you. I want to do them, but if my health isn't there, I must rest instead.

Beth Oberin has a fantastic "Open Letter to Normals" that says it all. Please read it and you may understand more about us. (gossamer@tertius.net.au) on it.

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