AS is like having a lifetime partner
It is not one that anyone would choose so it is natural to battle against it at first.
Your first line of defence is often to pretend it's not there - to carry on with life as normal. This can work for a while but it has a habit of catching you out.
After time, with diagnosis and treatment it is possible to develop a positive approach to the managing your AS - learning to exercise, doing your stretches and finding the right level of medication. BUT, it's also important to pay attention to how you manage life as a whole.
Impact of AS
The impact of AS can seep into all aspects of your life. It can affect you internally - how you think and feel about yourself and the world and it can affect your external life - your work, relationships and leisure activities. It can cause enormous challenges and losses but you can also grow; developing resilience, wisdom and often a great sense of humour.
People vary as to how well they cope but there are certain themes that emerge.
In younger years, you can feel robbed of the life you might have had - the ability to socialise without fear of pain and fatigue; play sports; develop a career of choice. This can lead to a sense of anger but without a focus which in some cases may lead to depression, often compounded by a sense of fear and uncertainty about the future.
There may be concerns about forming relationships and then about managing with young children - coping with the exhaustion and sometimes a sense of guilt about not being able to manage the children physically - lifting and playing with them. This can be much more about a sense of loss for the parent who regrets not being able to engage with the child on a physical level than any actual negative impact on the children who often are well compensated for by additional attention in other ways.
While many with AS are able to continue with their original employment routes, there are those that will have had to change or adapt their work and some that have to stop or take time out. Different types of employment (and employers) have different effects. The ideal job would be reasonably active, not too pressurised with an understanding employer but these jobs are scarce in the real world. So many with AS are very determined in their approach and do not want to let the AS ‘win'. This may mean that you plough on at work but have very little left when you get home.
Relationships can suffer, with partners often at a loss to know how to cope with ‘Mr or Mrs Grumpy' who walks through the door in the evening. It is often said that it is not just the person affected that has AS but the family members too. Misunderstandings can easily arise from something as simple as the need of a person in pain to have a little space, being interpreted as rejection by their partner.
Intimate relationships are about close companionship and shared experiences expressed within a physical relationship. This can be another aspect of life with AS that is affected. Difficulties with sexual activity may occur due to a number of reasons including the side effects of medication, pain through contact, fear of contact, tiredness and restricted movement. In turn, a cycle can develop where it is difficult to re-connect physically after a hiatus in a sexual relationship. One person may feel responsible and guilt gets in the way of passion. Talking with each other about this may feel difficult but sharing your innermost feelings is a form of intimacy even if you are unable to connect physically and can strengthen a relationship. It may also be worth a visit to the GP who may have suggestions for some treatment.
Human beings are social animals but not everyone with AS feels able to be sociable when they might be expected to. This is often because of fatigue but AS can also lead to people isolating themselves. This may be due to physical restrictions in ordinary communication - if you can't turn your head to the side it is difficult to follow conversations in group settings. It can also be because of a lack of confidence and poor self-image due to physical changes. This is likely to get worse if you avoid social occasions so, within limits, it is better to try to participate a little than completely withdraw.
What can help?
Acceptance of AS transforms the experience from being at war with a part of yourself to recognising your needs as a whole person.
Many fear that giving up the battle means giving in to the AS but it is not about winning or losing but working with the AS - if you attend to its needs (rest and relaxation as well as exercise) you are more likely to be able to get on with all the usual aspects of life.
Incorporating this way of thinking into your life takes time and practice. This may mean paying attention to your emotional and psychological needs and for some that will involve acknowledging a struggle for which you may need professional help.
It is very important to see your GP and discuss treatment options if you feel you may be suffering from a depression that you just can't seem to come through on your own. There are plenty of older people with AS who have gone through periods of depression when they were younger who now see it as part of a process of acceptance.
Facing the condition directly and accepting your needs with it can help in all aspects of life. It can help in talking honestly with employers about some simple adjustments you might need in your workplace and it can help in discussions at home about what you can and can't do. It can also help in how you manage yourself socially - working out who needs to know
Trying to prevent some of the worst effects of stress will reduce physical tension which has to be beneficial in managing the condition. Incorporating some time in your life for some form of relaxation can pay huge dividends - this can vary for different people from full meditation to doing an activity that relaxes you such as fishing, walking or singing in a choir. If you can learn and practise breathing exercises this is a simple but effective form of stress management that you can use at any time. Talking with someone who understands can be very helpful. This may be someone you have met through NASS, an understanding partner or friend or a professional counsellor.
It can help to have a mental (or written) list of what helps you to keep going through the difficult times. Knowing that you have got through it before and reminding yourself what worked then is a good strategy. Some things on the list may be practical things you can do and some could be more to do with the way you think about things - reminding yourself that you have limits and not to ‘beat yourself up' about the things you feel you should be doing.
There are many, many people who live full, satisfying lives with AS. Not everyone will experience the difficult emotional aspects and some will only experience them for a stage in their lives and will come through it - as is the case for the general population. Some people with AS will struggle emotionally at some time due to the effects of the condition and that is the case with any long term condition characterised by chronic pain. That knowledge and knowing that it is OK to ask for help can make a difference.
Specialist Neuro Counsellor, Royal National Hospital for Rheumatic Diseases