Am I letting them down?

Published in InterAction 66, Winter 2008

Anxiety and worry can be disabling additions to the daily struggle for someone living with chronic illness.

We regret that our medical advisers cannot respond to individual enquiries.

Dear Doctor: Am I letting them down?

My husband has had a series of mini strokes and I am scared for the future. I have had M.E. for 13 years and I thought I was managing but recently I had a relapse. I can get about the house but it’s really set me back. I have a lot on my mind and I can’t seem to empty it from all the things that are going on. Pacing, relaxation techniques etc. are all very well but it is so difficult to do. I am finding it hard to motivate myself to do anything. My sister has stopped coming over to help with the shopping and housework as the arthritis in her neck and shoulders is affecting her driving. She is on her own and in her 60s now so really I should be helping her. My son has given up his job as a lorry driver and he’s looking after the kids while his wife goes out to work. She wants them to move to Canada. I can’t tell my family how I’m feeling because I feel as though I am letting them down.

Our principal medical adviser Professor Tony Pinching replied:

I was sorry to read of these difficulties. Although the specific issues are particular to you, I have heard many similar stories and comments from my patients. However, the most important thing is that you should share your concerns with someone who knows you well, whom you trust, and who can guide you to a way forward. What I will do here is to pick up what seem to be some of the themes, which may be helpful to you and others in similar situations.

Firstly, if you have a setback after managing OK, you won’t be at your best and everything will seem that much harder. You may be upset or disappointed with yourself because of the relapse. It could also be that the extra worries you have are contributing to your setback. You obviously have some concerns at the moment and probably additional practical tasks, all of which will have made it harder to stick to your routines and pacing approach. Remember that M.E. affects not just physical energy, but also cognitive and emotional energy. If you have had to use more of any of these, there will be less available for the others.

The issues that are affecting you are normal worries, but they will be more so because of their actual or potential impact on you, being vulnerable because of your illness and its effect on your functioning.

However you do seem to be starting to think mainly about the negative sides of things that are happening; this is understandable, but not necessarily helpful! And you seem to be anticipating things that may not happen at all. And are you deciding what others will think or do, without giving them a chance to do so themselves? Again, it is understandable that you will not want to add to other people’s burdens, but perhaps they don’t see the situation the same way? Quite often, people want to help and will even find it beneficial for themselves to be helping you, despite their own problems and commitments.

And why should anyone think you are letting them down? If you are ill, and have had a setback, how can that be letting anyone down? Your family may sense how you are feeling, but may not want to say. And surely family will be among those who know you best? Don’t cut yourself off from the help that you need.

Might there be a little element of guilt that is making you think this way? Guilt is a very common emotion, but it is not a very helpful one, in my experience of M.E. It makes you do and think things that may not be needed at all, adding to your own problems (and that doesn’t help others either!). Maybe you need to work out where that feeling comes from and how you can deal with it. If things are hard for you at the moment, then this is the time to ask for help.

I do find that a lot of patients start to anticipate that others are too busy to help, when they would actually be only too happy to do extra, if asked. They may even see that you need help, but may pick up the signal that you don’t want to ask, or would reject offers of help. Why not talk it through and solutions may start to pop up easier and sooner than you realise!

Professional support

But having M.E. can be very lonely and isolating. Indeed, there can be times when it is harder to reach out for help from family and friends. That may be a moment to talk with a professional.

Your GP or specialist should be able to guide you, perhaps to talk to a suitable counsellor or therapist. It may be a way of opening up safely about these difficult thoughts, without having to worry about how key relationships might be affected. Giving yourself some space to work through your concerns and getting a fresh perspective on your situation, can begin a process of putting you back in touch with those who are important to you.

Sometimes, anxiety states can result from illness and situations such as these. It is not surprising and not a reason to deny yourself help – more a reason to ask for it. While talking therapies can help a lot, sometimes the situation can be helped by the judicious use of medication. Talk this through with your doctor.

Are you sleeping?

If the increase in anxiety is linked to sleep disturbance, then medication such as trazodone or mirtazapine can be helpful, working on sleep structure and also helping mood at doses that are usually tolerated by patients with M.E. Another approach would be a low dose of citalopram or sertraline, antidepressants that have a good antianxiety effect, and again are generally well tolerated in M.E. Other combinations of medication with a talking therapy can be helpful in particular people and you should discuss what is best with your GP.

Above all, if you are going through a difficult patch, that is the time to call up the reinforcement! You can turn it into an opportunity to refresh your own coping skills, and to review your priorities and your perspectives.