I am wondering what others feel.

[SecretlyDisabled7]

My needs assessment says to write others about my inability to do tasks, daily work, to talk with others. Do I have a question? Yes, many. What do I do to explain to others how I feel? How do I get through a day? Do I go into a job ( I work diff places) and say I am disabled when I look fine? How do I survive this? There are days I think it would be better if I simply didn't exist. Not out of depression so much as pain, inability to make new friends, not having the life I expected to ever have at 72, and not remembering the best of things. Does anyone share this and how do they cope with it?

[lupus-support1 Administrator]

Many people have the same feelings as you! Many people are afraid/worried/anxious about using the word "depression" as if this is abnormal or a sign of moral failure. It would be abnormal NOT to feel depressed or anxious at times. It might even be a sign of brain inflammation, says Professor David Isenberg (University College Hospital , London).

It is sometimes difficult to talk to family or friends . You don't want to burden them , for example, or feel ashamed as if you are a failure, which you are not, or morally weak, or otherwise! You have been dealt a bad hand of cards that has led you to having an painful, incurable and chronic painful disease that can strike at any time, making flares unpredictable.

Sometimes, it is important to recognise you need to talk to someone unconnected - they are psychotherapists, who have no personal connection with you, so you don't have to worry about their feelings of feeling you are a burden.

How to get a therapist, however, is another matter. If you are in the UK, you can ask your GP for a referral. However, you may only get 6 sessions with CBT and while the system will tell you, "it's evidenced based" and the best, this isn't quite true. Some people have been told "to think positive" or to "stop your negative thoughts" when you are in pain and exhausted from the indescribable fatigue that hits. Or, to stop dwelling on the past when the things that have been lost or taken away as the result of your disease, can be dismissed, rather than taken seriously by someone who is listening to your story. A story about what has been cruelly taken from you, deserves proper attention and care. But, 6 or 12 sessions is really not sufficient but the NHS cannot cope and getting what you need on the NHS is becoming incresingly more difficult.

Some do find CBT helpful and if it is offered, take it, but many do not. They can feel they are yet another failure since others have CBT and are "cured"! This is also an illusion. You may find that CBT is all you need, but don't feel a failure if you don’t !

Does this mean that therapy is useless? No! Therapy - finding the right kind and the right person, can be a challenge. Talking therapies do work but there isn't a magic wand and you may feel worse before you get through the pain and loss you have suffered. It might also stir up other losses you have suffered in your life.

This is different from getting your basic needs met, whether you need a carer or practical help at home. These practical issues can be dealt with through an occupational therapist and your GP can refer you. As I don't know your situation, you can discuss this with your GP or social services.

You are not alone. Your story is familiar. Sometimes, people find writing helps - like a diary, as if you are speaking with a friend, where you put down your thoughts and feelings, which you might never disclose. However, I also think that it is better to share your story with an emapthic listener, but that is your choice.

If you want to know more about talking therapies, let me know. LUpus Patients Understanding & Support (LUPUS) was established in 2003 to provide free information and online psychological support.

With good wishes,

Ros